Tuesday, May 29, 2012
Owning a Disability
Wow, it's been two weeks since I blogged. Mea culpa. I got lazy, I guess -- or uninspired. Hope my American readers all had a great Memorial Day weekend!
I've been thinking a lot about the ways in which disability can form a person's identity, in either a positive or negative way (i.e. THIS is who I am, or this is who I do NOT want to be). Benjy is such an admirable person for the way he owns his disabilities.
"Oh, I have Asperger's," he'll say, either in explanation of some oddity about himself or just to convey who he thinks he is. He has said this to adults and kids alike. I've heard him talk about his anxiety and depression, too. There is no shame or self-loathing there. He owns his disabilities, knows they are a part of the amalgam of things that make Benjy Benjy, and therefore to be accepted, if not embraced.
I love that about him. He is much more at ease with himself than I was with myself, until fairly recently.
Because I have a disability too, and it has taken me a long time to be able to talk about it, even though it is a fairly obvious one.
I have Tourette's Syndrome, which has awkward symptoms, to put it mildly. Even medicated I sometimes tic, so it's not like people don't notice something's up.
For years, I couldn't acknowledge this issue to anyone but myself or my family. If some cruel person made fun of me, or accused me of "talking to myself," I would not say, "I have a disability, and it's called Tourette's, and it causes me to have vocal and motor tics." No way. I didn't even KNOW it was a disability, let alone admit as much. I just knew I did these weird things, and they were called tics, and I went to see a doctor in New York City once a month, and this doctor put me on The Worst Medication In The World, AKA Haldol, and it turned me into a fat zombie with slurred speech but I still could not own this thing that I had.
I remember as a graduate student sitting in the manuscripts collection of the British Library, looking delightedly at some 19th-century plays and theatre memorabilia for my dissertation. I was in heaven, English nerd that I was. And this horrible woman was sitting at the next table, looking at some medieval illuminated mansucripts that were WAY too good for her, and she kept angrily shushing me -- I guess I was making soft noises, because I was not at all aware of it and usually I am -- and glaring at me. If looks could kill I'd have died some horrible medieval death, on the spot.
I sat there, flushed with humiliation. I could not look her in the eye. I felt like a worm. Finally, when the shame of her abuse became greater than the shame of admitting my disability, I hissed, I have Tourette's Syndrome. I can't HELP it! And you know what she did? She waved me away with her hand like I was a gnat or something. Just dismissed me. So I went to the bathroom and cried for about ten minutes. When I got back to my table she was gone, but I didn't have the heart to sit there and continue my research. She had spoiled everything.
These days I have let go of my self-loathing. Like my boy, I know that my disability is simply a part of me. I have lots of friends who see it that way, and have had two husbands who were/are NOT EMBARRASSED TO BE ASSOCIATED WITH ME. Imagine that.
The reason I'm thinking about my Tourette's today is because I have gone off my medication, which put forty pounds on me over the past twelve years (still, it's better than the DREADED HALDOL), so I can try a new one. I am hoping this new one will ease my tics, not destroy me with side-effects, and allow me to return to my normal weight. I await its delivery at my door today with trepidation and a large dollop of hopefulness. In the meantime, two days off the Risperdal, the tics are waxing something fierce. I do not like it -- it's very uncomfortable, physically as well as socially -- but if I can get my old body back it will be worth a week of heightened ticciness.
I'll take Ben as my inspiration for how to live gracefully as the person I am.
I've been thinking a lot about the ways in which disability can form a person's identity, in either a positive or negative way (i.e. THIS is who I am, or this is who I do NOT want to be). Benjy is such an admirable person for the way he owns his disabilities.
"Oh, I have Asperger's," he'll say, either in explanation of some oddity about himself or just to convey who he thinks he is. He has said this to adults and kids alike. I've heard him talk about his anxiety and depression, too. There is no shame or self-loathing there. He owns his disabilities, knows they are a part of the amalgam of things that make Benjy Benjy, and therefore to be accepted, if not embraced.
I love that about him. He is much more at ease with himself than I was with myself, until fairly recently.
Because I have a disability too, and it has taken me a long time to be able to talk about it, even though it is a fairly obvious one.
I have Tourette's Syndrome, which has awkward symptoms, to put it mildly. Even medicated I sometimes tic, so it's not like people don't notice something's up.
For years, I couldn't acknowledge this issue to anyone but myself or my family. If some cruel person made fun of me, or accused me of "talking to myself," I would not say, "I have a disability, and it's called Tourette's, and it causes me to have vocal and motor tics." No way. I didn't even KNOW it was a disability, let alone admit as much. I just knew I did these weird things, and they were called tics, and I went to see a doctor in New York City once a month, and this doctor put me on The Worst Medication In The World, AKA Haldol, and it turned me into a fat zombie with slurred speech but I still could not own this thing that I had.
I remember as a graduate student sitting in the manuscripts collection of the British Library, looking delightedly at some 19th-century plays and theatre memorabilia for my dissertation. I was in heaven, English nerd that I was. And this horrible woman was sitting at the next table, looking at some medieval illuminated mansucripts that were WAY too good for her, and she kept angrily shushing me -- I guess I was making soft noises, because I was not at all aware of it and usually I am -- and glaring at me. If looks could kill I'd have died some horrible medieval death, on the spot.
I sat there, flushed with humiliation. I could not look her in the eye. I felt like a worm. Finally, when the shame of her abuse became greater than the shame of admitting my disability, I hissed, I have Tourette's Syndrome. I can't HELP it! And you know what she did? She waved me away with her hand like I was a gnat or something. Just dismissed me. So I went to the bathroom and cried for about ten minutes. When I got back to my table she was gone, but I didn't have the heart to sit there and continue my research. She had spoiled everything.
These days I have let go of my self-loathing. Like my boy, I know that my disability is simply a part of me. I have lots of friends who see it that way, and have had two husbands who were/are NOT EMBARRASSED TO BE ASSOCIATED WITH ME. Imagine that.
The reason I'm thinking about my Tourette's today is because I have gone off my medication, which put forty pounds on me over the past twelve years (still, it's better than the DREADED HALDOL), so I can try a new one. I am hoping this new one will ease my tics, not destroy me with side-effects, and allow me to return to my normal weight. I await its delivery at my door today with trepidation and a large dollop of hopefulness. In the meantime, two days off the Risperdal, the tics are waxing something fierce. I do not like it -- it's very uncomfortable, physically as well as socially -- but if I can get my old body back it will be worth a week of heightened ticciness.
I'll take Ben as my inspiration for how to live gracefully as the person I am.
Monday, May 14, 2012
R.I.P. Zoidberg
Over the weekend, while we enjoyed ourselves in sunny, lovely Connecticut (at the home of my sunny, lovely BFF Anke), one of the rockin' hermit crabs died.
I think his name was Zoidberg, but it might have been Goat.
This makes me sad. Especially because Benjy had forgotten to check their water dish before we left, even with prodding, and I found Zoidberg/Goat on top of the hermies' little drinking sponge, which was dry as a bone in a dry water dish.
Now, the other three hermies were fine, so I have to believe that Zoidberg/Goat was going to die anyway. But still, the thought of him searching for water, parched and possibly dying (well, certainly dying) makes me want to cry.
And here's the sad truth: Benjy loves animals more than anything on this earth, but he is not a good pet owner. If I didn't remind him to feed his fish and feed/water the rockin' hermies, they'd all have died a year ago. If I didn't drag him off the computer to clean the fish tank those little guys would be swimming in a murky stew.
And yet, he wants ever more animals. This drives me crazy.
But you know what? I was not so different. I loved animals beyond measure when I was eight, nine, ten, thirteen. We had a family cat, and I had a number of small rodents. I had a hermit crab, too. The hermie died quite quickly, but I don't remember ever receiving instructions for care. He probably either suffocated because we had no salt water in his tank, or died of loneliness because he was singleton and like most of us they need company.
My biggest animal (in every sense) was my horse, Stardust. She was my best friend in those lonely years, but if you think I mucked out her stall frequently enough you're quite mistaken. And there was the time I forgot to tell my father to buy more sweet feed and I got to the barn to feed her but there was no food. I gave her some extra flakes of hay and went home and wept. She got a disease colloquially known as mud fever as a result of my shoddy stall-mucking skills, and she got a fungus -- God knows why -- and lost half the hair on her body. These memories are excruciating to me. I let Star down, big time. I was not ready to be a horse owner at the age of thirteen, fourteen, and my parents were not interested in horse care, nor did they know anything about it.
I was like Benjy: in love with animals but not responsible enough to own any. I have such terrible remorse about my animal failures. There are more stories about Stardust to tell, some wonderful and some very sad. If I have the courage maybe I'll tell them to you sometime. If there are points to be awarded for love and affection then I should get a million of those. But I'd lose at least half of them for my benign neglect.
At least the weekend's death was on a small scale. I hope Benjy has learned a lesson about water bowls and small sponges and the value of even the littlest of lives.
I think his name was Zoidberg, but it might have been Goat.
This makes me sad. Especially because Benjy had forgotten to check their water dish before we left, even with prodding, and I found Zoidberg/Goat on top of the hermies' little drinking sponge, which was dry as a bone in a dry water dish.
Now, the other three hermies were fine, so I have to believe that Zoidberg/Goat was going to die anyway. But still, the thought of him searching for water, parched and possibly dying (well, certainly dying) makes me want to cry.
And here's the sad truth: Benjy loves animals more than anything on this earth, but he is not a good pet owner. If I didn't remind him to feed his fish and feed/water the rockin' hermies, they'd all have died a year ago. If I didn't drag him off the computer to clean the fish tank those little guys would be swimming in a murky stew.
And yet, he wants ever more animals. This drives me crazy.
But you know what? I was not so different. I loved animals beyond measure when I was eight, nine, ten, thirteen. We had a family cat, and I had a number of small rodents. I had a hermit crab, too. The hermie died quite quickly, but I don't remember ever receiving instructions for care. He probably either suffocated because we had no salt water in his tank, or died of loneliness because he was singleton and like most of us they need company.
My biggest animal (in every sense) was my horse, Stardust. She was my best friend in those lonely years, but if you think I mucked out her stall frequently enough you're quite mistaken. And there was the time I forgot to tell my father to buy more sweet feed and I got to the barn to feed her but there was no food. I gave her some extra flakes of hay and went home and wept. She got a disease colloquially known as mud fever as a result of my shoddy stall-mucking skills, and she got a fungus -- God knows why -- and lost half the hair on her body. These memories are excruciating to me. I let Star down, big time. I was not ready to be a horse owner at the age of thirteen, fourteen, and my parents were not interested in horse care, nor did they know anything about it.
I was like Benjy: in love with animals but not responsible enough to own any. I have such terrible remorse about my animal failures. There are more stories about Stardust to tell, some wonderful and some very sad. If I have the courage maybe I'll tell them to you sometime. If there are points to be awarded for love and affection then I should get a million of those. But I'd lose at least half of them for my benign neglect.
At least the weekend's death was on a small scale. I hope Benjy has learned a lesson about water bowls and small sponges and the value of even the littlest of lives.
Sunday, May 13, 2012
Disability and Work, Revisited
It's a long time since I wrote a post on Disability and Work. At the time, our family, our son, was struggling with severe mental illness. He wanted to die. He hurt himself sometimes. He could not be left alone, or even out of my sight. Work had become untenable; I was canceling classes and office hours right and left. I was distracted as hell. My child wanted to die, and I just didn't care about a bunch of Freshman English essays.
So I left work and we went from pinched to officially broke. Planning every expenditure down to the penny. Saying no to the kids. A LOT. Buying only used clothes and very little else, besides food. And buying that at places like Aldi. That part of it has not been fun.
But it's been great only having one full-time job. Because before I was doing at least two. Maybe two and a half.
And now, things are changing again. Because Benjy is so much better. Unbelievably so. (Well, he did have a breakdown last week as a result of an unpleasant encounter with another kid at the Joy School. But that was the first in months. And he recovered pretty quickly.) And we are afraid if I continue working just one full-time job, an unpaid one, we will never be able to retire. We are beginning to imagine Lars hobbling to work with a walker. And it's kind of funny but mostly sad.
So as of tomorrow I am throwing my hat back in the ring. I'm applying for college administrator positions (I think I'm finished with teaching).
We've had to really think this through. Because if I go to work it will mean that Benjy has to take the SPED van to and from school, instead of driving with me, and he'll need to let himself in the house after school and hang out until Saskia gets home. This scares me a little. But on the other hand he's twelve now, and in sixth grade. If not now, when?
Of course, I'm counting my chickens. I don't have a job yet, and it may take a very long time to find one. But I'm looking forward to having a couple hundred dollars to put in our empty savings account each month. And being able to replace our roof when it decides to implode on us (this will probably happen soon). And being able to pay off the thousand dollar car repair expense we just incurred.
I don't know what the future holds, and whether, if I get a job, I"ll be able to keep it. We take things one day at a time here in the Delaunay household. But I'm starting to develop a slightly longer perspective. Like maybe looking out a month at a time.
I'm doing that right now, and the month of May looks like it's going to be fair and warm.
So I left work and we went from pinched to officially broke. Planning every expenditure down to the penny. Saying no to the kids. A LOT. Buying only used clothes and very little else, besides food. And buying that at places like Aldi. That part of it has not been fun.
But it's been great only having one full-time job. Because before I was doing at least two. Maybe two and a half.
And now, things are changing again. Because Benjy is so much better. Unbelievably so. (Well, he did have a breakdown last week as a result of an unpleasant encounter with another kid at the Joy School. But that was the first in months. And he recovered pretty quickly.) And we are afraid if I continue working just one full-time job, an unpaid one, we will never be able to retire. We are beginning to imagine Lars hobbling to work with a walker. And it's kind of funny but mostly sad.
So as of tomorrow I am throwing my hat back in the ring. I'm applying for college administrator positions (I think I'm finished with teaching).
We've had to really think this through. Because if I go to work it will mean that Benjy has to take the SPED van to and from school, instead of driving with me, and he'll need to let himself in the house after school and hang out until Saskia gets home. This scares me a little. But on the other hand he's twelve now, and in sixth grade. If not now, when?
Of course, I'm counting my chickens. I don't have a job yet, and it may take a very long time to find one. But I'm looking forward to having a couple hundred dollars to put in our empty savings account each month. And being able to replace our roof when it decides to implode on us (this will probably happen soon). And being able to pay off the thousand dollar car repair expense we just incurred.
I don't know what the future holds, and whether, if I get a job, I"ll be able to keep it. We take things one day at a time here in the Delaunay household. But I'm starting to develop a slightly longer perspective. Like maybe looking out a month at a time.
I'm doing that right now, and the month of May looks like it's going to be fair and warm.
Friday, May 4, 2012
What We Have Take II
I've had a challenge from my wise and wonderful reader "Papa" (which I'm guessing is what his lucky grandchildren call him) to make a list of positive things we have around here, which is as long as my previous list of 19 crappy things.
Papa, you're on!
We have:
Cuteness (especially on the junior varsity level)
Creativity
Intelligence
Compassion
Some culinary abilities
A knockout voice (only one of us, sadly)
Killer paper-gunmaking abilities (only one of us, but the other one)
Decent interior decorating skills (yet a different one of us)
Technological prowess (some of us)
Musicality
Warmth
Excellent trampoline maneuvers
Awesome writing skills
Awesome translation skills
Some great art on our walls
Three beautiful hydrangea blossoms sitting on the coffee table in front of me (okay, okay, I'm stretching)
"Impeccable taste in literature" (quoting Dad, circa 1982. This compliment was actually a back-handed insult of my Top 40 musical taste)
Enough love to go around and then some
The most adorable canine felon in town -- he's really, really cute, despite being a worse dog even than Marley, who was reputedly pretty bad
Papa, are you satisfied? :)
Papa, you're on!
We have:
Cuteness (especially on the junior varsity level)
Creativity
Intelligence
Compassion
Some culinary abilities
A knockout voice (only one of us, sadly)
Killer paper-gunmaking abilities (only one of us, but the other one)
Decent interior decorating skills (yet a different one of us)
Technological prowess (some of us)
Musicality
Warmth
Excellent trampoline maneuvers
Awesome writing skills
Awesome translation skills
Some great art on our walls
Three beautiful hydrangea blossoms sitting on the coffee table in front of me (okay, okay, I'm stretching)
"Impeccable taste in literature" (quoting Dad, circa 1982. This compliment was actually a back-handed insult of my Top 40 musical taste)
Enough love to go around and then some
The most adorable canine felon in town -- he's really, really cute, despite being a worse dog even than Marley, who was reputedly pretty bad
Papa, are you satisfied? :)
Monday, April 30, 2012
What We Have
Recently I read a very good memoir by a former colleague, Amy Boesky, called What We Have. It's about her family's struggle with breast and ovarian cancer -- lots of these folks had one or both, and some, like Amy, took steps against getting them (read: prophylactic surgeries).
Amy and I have a lot in common. And the title of her book makes me think about what WE have.
We, readers, are the POSTER FAMILY for disability and illness. I feel like I should get a book contract simply for being who I am. (I guess I'd have to write the book at some point, but still). We should be the stars of a Lifetime movie ("A family ravaged by disease and death, but bound by love." Ugh).
So, are you ready? Here's what our families (Anna's and Lars's) have, all mushed together and in no particular order:
Breast Cancer -- on Anna's side brought to you by the letters "BRCA" and the number "1" (the dreaded BRCA1 gene mutation); on Lars's by age and menopause and who the hell knows what else.
Prostate Cancer (again, courtesy of that incorrigible gene)
Autism/Asperger's
Sensory Processing disorder
Asthma
Tourette's Syndrome
OCD
High Cholesterol
High Blood Pressure
Anxiety Disorder
Depression
Panic Disorder and Agoraphobia
Uh...what else? Oh yeah, dementia, possibly of the Alzheimer's variety
Polycethemia Vera (rare cancer of the blood)
Acute Pleva (that skin disease I warned you not to google in a previous post)
Possible Lupus (okay, we can't take credit for that one yet)
Too much smoking (is this a disease? maybe not but it might become one)
Possibly some tippling
Generalized weirdness and chronic studentitis (if you guessed that one's on Lars's side you'd be right)
I know there's some more stuff but I can't think of it right now.
In the spirit of full honesty, I'd like to inform you that a slight majority of these ailments come from my side -- at least, the traceable ones. The mental health issues are more nebulous, but I think they come more from the Teutonic half than the Jewish half. Lars might disagree with me there.
All four of us in the nuclear Delaunay family have things gone wrong with us. And so do our extended families. Dr. Boesky, we put you guys to SHAME.
What I like to think about us is that we're INTERESTING. We're not your average vanilla family. We've got stuff going ON. And I've got an endless supply of fodder for my writing.
Cool, right?
Amy and I have a lot in common. And the title of her book makes me think about what WE have.
We, readers, are the POSTER FAMILY for disability and illness. I feel like I should get a book contract simply for being who I am. (I guess I'd have to write the book at some point, but still). We should be the stars of a Lifetime movie ("A family ravaged by disease and death, but bound by love." Ugh).
So, are you ready? Here's what our families (Anna's and Lars's) have, all mushed together and in no particular order:
Breast Cancer -- on Anna's side brought to you by the letters "BRCA" and the number "1" (the dreaded BRCA1 gene mutation); on Lars's by age and menopause and who the hell knows what else.
Prostate Cancer (again, courtesy of that incorrigible gene)
Autism/Asperger's
Sensory Processing disorder
Asthma
Tourette's Syndrome
OCD
High Cholesterol
High Blood Pressure
Anxiety Disorder
Depression
Panic Disorder and Agoraphobia
Uh...what else? Oh yeah, dementia, possibly of the Alzheimer's variety
Polycethemia Vera (rare cancer of the blood)
Acute Pleva (that skin disease I warned you not to google in a previous post)
Possible Lupus (okay, we can't take credit for that one yet)
Too much smoking (is this a disease? maybe not but it might become one)
Possibly some tippling
Generalized weirdness and chronic studentitis (if you guessed that one's on Lars's side you'd be right)
I know there's some more stuff but I can't think of it right now.
In the spirit of full honesty, I'd like to inform you that a slight majority of these ailments come from my side -- at least, the traceable ones. The mental health issues are more nebulous, but I think they come more from the Teutonic half than the Jewish half. Lars might disagree with me there.
All four of us in the nuclear Delaunay family have things gone wrong with us. And so do our extended families. Dr. Boesky, we put you guys to SHAME.
What I like to think about us is that we're INTERESTING. We're not your average vanilla family. We've got stuff going ON. And I've got an endless supply of fodder for my writing.
Cool, right?
Saturday, April 21, 2012
Writing Dilemma
As a fiction writer, I have the infinite pleasure of dreaming up stories. Anything goes with fiction. But what about memoir?
A year ago I started writing personal essays. It all began when Benjy was seriously in decline, and the writing was more therapeutic than anything. But after six months I ended up with an amazing piece, so I changed all the names (to the ones you see on this blog) and sent it off. I decided to eschew my usual publishing haunts (literary journals) and try for a glossy magazine. I chose O Magazine and the editor there loved it, but alas, they do not publish much in the way of parenting pieces, so they passed.
So I decided to send it to The Sun, a gorgeous, New Yorker-esque literary magazine where it now awaits a decision. In the meantime, I wrote an essay about my relationship with my deceased sister, and a short (800-word) essay about parenting Benjy -- an up-beat one, but it does refer to his mental health issues and my concerns about his functioning in later life. This time I used his real name.
My dilemma, which is any personal essay writer's dilemma, is how do I deal with the fallout when I reveal things about others that could be hurtful, now or later? That was the reason I decided to blog pseudonymously, and to change all the names in my long essay about parenting a child who wants to die (although I have not changed my own name in that one). All of the essays I've written in the past year reveal things about me AND the other person that that person might not like -- all true things, but still.
In Benjy's case, he knows I write about him but he has never read anything I've written. He owns his Asperger's and his mental health issues -- he is not ashamed of them, and he himself sometimes brings them up with others, even other kids.
But what if he reads one of my essays in print when he's sixteen, seventeen, and doesn't like what he sees? Do I have the right to publish this stuff, to think about myself -- for once! -- and consult my own desires? Because this is stuff I want to write, and I think people would want to read. Lots of people struggle with one thing or another -- most of us do -- and reading how someone else has dealt with their challenges helps us. I know it helps me.
What I do know is that I'm going to keep writing memoir. I love it, and I think I have something of value to contribute. The question for me is, do I change the names of others -- and if so, do I have to write under a pseudonym, or is changing their names enough? I don't want to hurt Ben, or anyone I love (or even just like), so I'll have to figure this out.
And that's what I'm working on this morning with my cup of coffee and a warm hound by my side.
A year ago I started writing personal essays. It all began when Benjy was seriously in decline, and the writing was more therapeutic than anything. But after six months I ended up with an amazing piece, so I changed all the names (to the ones you see on this blog) and sent it off. I decided to eschew my usual publishing haunts (literary journals) and try for a glossy magazine. I chose O Magazine and the editor there loved it, but alas, they do not publish much in the way of parenting pieces, so they passed.
So I decided to send it to The Sun, a gorgeous, New Yorker-esque literary magazine where it now awaits a decision. In the meantime, I wrote an essay about my relationship with my deceased sister, and a short (800-word) essay about parenting Benjy -- an up-beat one, but it does refer to his mental health issues and my concerns about his functioning in later life. This time I used his real name.
My dilemma, which is any personal essay writer's dilemma, is how do I deal with the fallout when I reveal things about others that could be hurtful, now or later? That was the reason I decided to blog pseudonymously, and to change all the names in my long essay about parenting a child who wants to die (although I have not changed my own name in that one). All of the essays I've written in the past year reveal things about me AND the other person that that person might not like -- all true things, but still.
In Benjy's case, he knows I write about him but he has never read anything I've written. He owns his Asperger's and his mental health issues -- he is not ashamed of them, and he himself sometimes brings them up with others, even other kids.
But what if he reads one of my essays in print when he's sixteen, seventeen, and doesn't like what he sees? Do I have the right to publish this stuff, to think about myself -- for once! -- and consult my own desires? Because this is stuff I want to write, and I think people would want to read. Lots of people struggle with one thing or another -- most of us do -- and reading how someone else has dealt with their challenges helps us. I know it helps me.
What I do know is that I'm going to keep writing memoir. I love it, and I think I have something of value to contribute. The question for me is, do I change the names of others -- and if so, do I have to write under a pseudonym, or is changing their names enough? I don't want to hurt Ben, or anyone I love (or even just like), so I'll have to figure this out.
And that's what I'm working on this morning with my cup of coffee and a warm hound by my side.
Friday, April 20, 2012
Six Months...
Six months ago tomorrow, I started this blog. October 21, 2011. It was a week, maybe two, after Benjy entered an inpatient psychiatric unit, because his hankering for death had become so strong I no longer felt I could keep him safe on my own. That was a dark, dark time.
Benjy has flirted with suicide, off and on, for a long time. He has had periods, brief and extended, of dysregulation so severe they have thrown our entire household into despair. His disability has challenged my parenting abilities, disrupted my equanimity -- what little I had -- again and again. How do you parent a child who is so frightened of vomiting he literally shakes every time he gets a stomach ache? Who is convinced the word will end, very soon, and we will all be plunged into icy darkness? Who believes said world is filled with miscreants and evil-doers, and that none of us are safe -- no matter how many times you tell him about the doctors and teachers and social workers, and so on, who strive every day to make our world better?
How do you parent a child who does not smile, or laugh, for months on end? Whose despair curls him up in a fetal position on his bed, when he ought to be out riding his bike or shooting hoops? Who cries out in his agony of loneliness, I'm lonely! Help me to not be lonely! and you know there are no kids who would want to be with him, so you can't help him?
Readers, it's hard. It's a heart-rending business, this Asperger's-anxiety-depression-suicidality. Parenting Benjy -- if it all works out -- will be my great work, my magnum opus, the one real achievement in my life. Sure, I've completed a PhD, published in some good places. But those pale in comparison to guiding Ben through life and keeping him safe. I think I've done a decent job of it so far -- and I know my limits, will call in the reinforcements when I need to -- and I hope that will continue.
But here's the beautiful thing: our lives, Ben's and Lars's and Saskia's and mine, have gotten so much better! Maybe it's being on the right meds. I know FOR SURE that being at the right school helps a lot. And finding -- finally! -- some good friends, not many but a few, which is enough. These things have bred optimism in my boy. He smiles now, laughs, is sometimes silly. How happy that makes the rest of us!
A lot has happened in the six months since I started this blog. We hit rock bottom and began our ascent. I stopped working and opened my life up to a measure of peace. We got more information about Saskia's illness -- not enough, but more -- and she had her ups and downs. Wow. What's in store for the next six months?
I don't know, but I've got some stuff to look forward to. I've got a whole bunch of essays and stories out on submission; I suspect there will be good news and bad on those. We have Saskia's voice recital coming up, and I love hearing her sing -- she's a lyric soprano, has a gorgeous classical voice. If she becomes an opera singer someday, which is what she thinks she would like, I will not be remotely surprised. That kid has talent! Things will continue to go swimmingly between Lars and me, of that I am sure. More late-night walks with the Hellacious Hound to look forward to -- I love those!
And then there's Ben. I hope he will continue to get stronger and happier, and fill our lives with his own special radiance. And lots of arcane knowledge, which is his specialty.
Readers, what's changed for you in the past six months, and what are your coming delights?
Benjy has flirted with suicide, off and on, for a long time. He has had periods, brief and extended, of dysregulation so severe they have thrown our entire household into despair. His disability has challenged my parenting abilities, disrupted my equanimity -- what little I had -- again and again. How do you parent a child who is so frightened of vomiting he literally shakes every time he gets a stomach ache? Who is convinced the word will end, very soon, and we will all be plunged into icy darkness? Who believes said world is filled with miscreants and evil-doers, and that none of us are safe -- no matter how many times you tell him about the doctors and teachers and social workers, and so on, who strive every day to make our world better?
How do you parent a child who does not smile, or laugh, for months on end? Whose despair curls him up in a fetal position on his bed, when he ought to be out riding his bike or shooting hoops? Who cries out in his agony of loneliness, I'm lonely! Help me to not be lonely! and you know there are no kids who would want to be with him, so you can't help him?
Readers, it's hard. It's a heart-rending business, this Asperger's-anxiety-depression-suicidality. Parenting Benjy -- if it all works out -- will be my great work, my magnum opus, the one real achievement in my life. Sure, I've completed a PhD, published in some good places. But those pale in comparison to guiding Ben through life and keeping him safe. I think I've done a decent job of it so far -- and I know my limits, will call in the reinforcements when I need to -- and I hope that will continue.
But here's the beautiful thing: our lives, Ben's and Lars's and Saskia's and mine, have gotten so much better! Maybe it's being on the right meds. I know FOR SURE that being at the right school helps a lot. And finding -- finally! -- some good friends, not many but a few, which is enough. These things have bred optimism in my boy. He smiles now, laughs, is sometimes silly. How happy that makes the rest of us!
A lot has happened in the six months since I started this blog. We hit rock bottom and began our ascent. I stopped working and opened my life up to a measure of peace. We got more information about Saskia's illness -- not enough, but more -- and she had her ups and downs. Wow. What's in store for the next six months?
I don't know, but I've got some stuff to look forward to. I've got a whole bunch of essays and stories out on submission; I suspect there will be good news and bad on those. We have Saskia's voice recital coming up, and I love hearing her sing -- she's a lyric soprano, has a gorgeous classical voice. If she becomes an opera singer someday, which is what she thinks she would like, I will not be remotely surprised. That kid has talent! Things will continue to go swimmingly between Lars and me, of that I am sure. More late-night walks with the Hellacious Hound to look forward to -- I love those!
And then there's Ben. I hope he will continue to get stronger and happier, and fill our lives with his own special radiance. And lots of arcane knowledge, which is his specialty.
Readers, what's changed for you in the past six months, and what are your coming delights?
Sunday, April 15, 2012
Contact me!
Hi all,
I just realized it would be a good idea to have an email address connected to this blog. (I'm not always the brightest star in the galaxy...). So, should you want to contact me regarding the blog OR JUST TO SAY HELLO, here it is:
anna.delaunay@earthlink.net
I also futzed around with the layout of the blog, adding a "follow by email" button and a "favorite posts" button. (Blogger is TRES COOL!)
The email address, if you forget it, is in the profile on the right side.
I hope to hear from you!
I just realized it would be a good idea to have an email address connected to this blog. (I'm not always the brightest star in the galaxy...). So, should you want to contact me regarding the blog OR JUST TO SAY HELLO, here it is:
anna.delaunay@earthlink.net
I also futzed around with the layout of the blog, adding a "follow by email" button and a "favorite posts" button. (Blogger is TRES COOL!)
The email address, if you forget it, is in the profile on the right side.
I hope to hear from you!
Friday, April 13, 2012
Addendum to Last Post
I left something out of the last post.
LARS IS STILL A HOTTIE.
I like living with a dorky hobo! Just in case someone misunderstood me. ;)
LARS IS STILL A HOTTIE.
I like living with a dorky hobo! Just in case someone misunderstood me. ;)
Thursday, April 12, 2012
Sartorial Deficiencies (Or, Living With a Hobo)
Last night, Lars and I went before our town's Transportation Management Committee and pleaded for a guardrail to be erected along our property line. We live on the corner of two rather busy streets, and our house is set into a sort of bowl, below street level. Over the past six years, three cars have hurled themselves down our declivity at night, and two of them have smashed into our house.
Yikes.
So, I prepared a presentation, including narratives from police reports and a cool map of the property complete with colored lines representing the trajectories of the three cars (courtesy of Lars). I put on a semi-respectable outfit (read: black jeans, shell, jacket, none of which were rumpled) and a little makeup. I made sure my fingernails were clean.
I may not achieve the perfection of Saskia (not even close) but I am not a TOTAL slob. Only a little slobby.
Well, we're sitting there listening to an ENDLESS presentation by some crunchy bike folks who want biking lanes on the roads, and listening to the HIGHLY ANNOYING guy to Lars's right go on ad nauseum about how his wife will NOT TOLERATE white lines on "her" street (I know, you couldn't make this stuff up) and then it's our turn.
Lars had asked to play a role in this affair so I allowed him to hand out his little maps. and that's when I saw the hole in the arm of his green and blue striped rugby shirt. Right near the elbow. A large, round hole.
My heart sank. I looked a little closer and noticed that the whole shirt looked kind of dingy. Like it maybe hadn't been washed since four of five wearings ago. And then I tried to remember him leaving the house this week in another shirt and I couldn't. HE HAD BEEN WEARING THIS DINGY, HOLEY SHIRT TO WORK FOR AT LEAST A WEEK.
I thought I was going to die.
"You have a HOLE in your shirt!" I hissed.
"Yeah?" he said, grinning.
"You look like a hobo!"
"Hee hee," he replied.
As if that embarrassment wasn't enough, I noticed he had two sets of reading glasses in use (or disuse). One perched on the top of his head, the other hanging from the neck of his shirt.
"Do you REALLY need two pairs of glasses?" I snapped.
He looked at me with raised eyebrows.
"These are two different strengths," he said, sounding hurt.
I am married to the world's dorkiest hobo. I miss the days when he only wore black turtlenecks and was this blond, European hottie in black turtleneck and blue jeans. It was a lot of black but you can't see dirt on it, at any rate.
Fortunately the Traffic Committee did not hold Lars's sartorial deficiencies against us. We got the guardrail we asked for.
But here's the scariest thing of all. This morning when I noticed Lars was wearing the green and blue rugby shirt again, and that his pants looked a bit ripe as well, I sternly sent him upstairs to change.
And Benjy, who was sitting at the table eating his waffles, said, "I'm on your side, Dad! Who CARES about that stuff, anyway?
Oh joy, now there are two of them.
Yikes.
So, I prepared a presentation, including narratives from police reports and a cool map of the property complete with colored lines representing the trajectories of the three cars (courtesy of Lars). I put on a semi-respectable outfit (read: black jeans, shell, jacket, none of which were rumpled) and a little makeup. I made sure my fingernails were clean.
I may not achieve the perfection of Saskia (not even close) but I am not a TOTAL slob. Only a little slobby.
Well, we're sitting there listening to an ENDLESS presentation by some crunchy bike folks who want biking lanes on the roads, and listening to the HIGHLY ANNOYING guy to Lars's right go on ad nauseum about how his wife will NOT TOLERATE white lines on "her" street (I know, you couldn't make this stuff up) and then it's our turn.
Lars had asked to play a role in this affair so I allowed him to hand out his little maps. and that's when I saw the hole in the arm of his green and blue striped rugby shirt. Right near the elbow. A large, round hole.
My heart sank. I looked a little closer and noticed that the whole shirt looked kind of dingy. Like it maybe hadn't been washed since four of five wearings ago. And then I tried to remember him leaving the house this week in another shirt and I couldn't. HE HAD BEEN WEARING THIS DINGY, HOLEY SHIRT TO WORK FOR AT LEAST A WEEK.
I thought I was going to die.
"You have a HOLE in your shirt!" I hissed.
"Yeah?" he said, grinning.
"You look like a hobo!"
"Hee hee," he replied.
As if that embarrassment wasn't enough, I noticed he had two sets of reading glasses in use (or disuse). One perched on the top of his head, the other hanging from the neck of his shirt.
"Do you REALLY need two pairs of glasses?" I snapped.
He looked at me with raised eyebrows.
"These are two different strengths," he said, sounding hurt.
I am married to the world's dorkiest hobo. I miss the days when he only wore black turtlenecks and was this blond, European hottie in black turtleneck and blue jeans. It was a lot of black but you can't see dirt on it, at any rate.
Fortunately the Traffic Committee did not hold Lars's sartorial deficiencies against us. We got the guardrail we asked for.
But here's the scariest thing of all. This morning when I noticed Lars was wearing the green and blue rugby shirt again, and that his pants looked a bit ripe as well, I sternly sent him upstairs to change.
And Benjy, who was sitting at the table eating his waffles, said, "I'm on your side, Dad! Who CARES about that stuff, anyway?
Oh joy, now there are two of them.
Tuesday, April 10, 2012
6 Reasons Why You Need an Advocate
If you've got a kid on the autism spectrum, here are six reasons why you need an advocate:
1. She knows special education law a lot better than you do (probably).
2. She knows how to talk about your kid's needs in a way that makes your TEAM sit up and listen.
3. She's not going to burst into tears during an IEP meeting, the way you might (okay, I'm talking about myself here).
4. She'll calm you down when you are freaking out about the way your TEAM chair pronounced the words "out of district."
5. She knows about programs YOU want to know about.
6. If she's worth her salt she'll mean the difference between optimal services/placement and insufficient ones.
Of course, you may be willing and able to do it on your own. I'm not. Our advocate is a keeper -- you can find her here.
1. She knows special education law a lot better than you do (probably).
2. She knows how to talk about your kid's needs in a way that makes your TEAM sit up and listen.
3. She's not going to burst into tears during an IEP meeting, the way you might (okay, I'm talking about myself here).
4. She'll calm you down when you are freaking out about the way your TEAM chair pronounced the words "out of district."
5. She knows about programs YOU want to know about.
6. If she's worth her salt she'll mean the difference between optimal services/placement and insufficient ones.
Of course, you may be willing and able to do it on your own. I'm not. Our advocate is a keeper -- you can find her here.
Sunday, April 8, 2012
How I'm Whiling Away the Hours
Watching this clip that combines a favorite aria ("Saper Bramate" -- the mandolin serenade from Paisiello's "Il Barbiere di Siviglia") and still clips from an all-time favorite movie -- Kubrick's(via Thackeray) "Barry Lyndon."
I love this stuff! Barry Lyndon is a gorgeous musical and painterly excursion, as well as a great story. And Paisiello's barber of Seville, which predates Rossini by a hundred years or so, is lovely.
Listen, watch, and be amazed.
I love this stuff! Barry Lyndon is a gorgeous musical and painterly excursion, as well as a great story. And Paisiello's barber of Seville, which predates Rossini by a hundred years or so, is lovely.
Listen, watch, and be amazed.
Trying to Figure Things Out
Have you ever spent a few hours simply trying to figure things out? Things like, what you are going to cook for dinner this week or when (if ever) and where your next vacation will be or how to get your kid more birthday invitations? Have you ever struggled to understand your teenager or your socially impaired child? An illness? A badly behaved pooch?
I spend a lot of time trying to figure out our lives. Like last night, lying sleepless in bed worrying about money. And after I was finished worrying about money, fretting about losing weight. And when I finished there, cogitating about the expensive place town we live in, and what would happen in terms of Benjy's school placement and Saskia's social life, if we were to live somewhere else. And then the horrid, horrid ear worm set in. (Dare I say it? the sound track to --aargh! -- Titanic, which I had the misfortune of hearing yesterday while sitting with Saskia, waiting for the Hunger Games to start.)
By the time I got to sleep last night it was, oh, 3 a.m. or so. And then I had bad dreams about -- well, never mind.
I still have not sorted things out. (Anyone have any thoughts on how to stretch $47 for a week? If so let me know.) But my optimism is irrepressible, which is why I keep going through the exercise of figuring things out. Someday it's going to work.
In the meantime, Benjy has a looong get-together with a friend today, and my bestie, Anke, is coming from Connecticut to hang with me. She, Saskia and I will have a girl's day out on Newbury Street while the rest of the world -- well, the Christians in the world -- eats ham and potatoes and whatever else you eat on Easter.
We're hoping Starbucks will be open. Not that I'll be drinking. Not on $47 that's got to last till Friday. But I'll be having a blast, and so will Benjy and Saskia, which you can do on $0.00 per day. I don't know what Lars will be up to, but if I had to guess I'd say jogging and then snoozing.
Happy Passover and Easter, peeps!
I spend a lot of time trying to figure out our lives. Like last night, lying sleepless in bed worrying about money. And after I was finished worrying about money, fretting about losing weight. And when I finished there, cogitating about the expensive place town we live in, and what would happen in terms of Benjy's school placement and Saskia's social life, if we were to live somewhere else. And then the horrid, horrid ear worm set in. (Dare I say it? the sound track to --aargh! -- Titanic, which I had the misfortune of hearing yesterday while sitting with Saskia, waiting for the Hunger Games to start.)
By the time I got to sleep last night it was, oh, 3 a.m. or so. And then I had bad dreams about -- well, never mind.
I still have not sorted things out. (Anyone have any thoughts on how to stretch $47 for a week? If so let me know.) But my optimism is irrepressible, which is why I keep going through the exercise of figuring things out. Someday it's going to work.
In the meantime, Benjy has a looong get-together with a friend today, and my bestie, Anke, is coming from Connecticut to hang with me. She, Saskia and I will have a girl's day out on Newbury Street while the rest of the world -- well, the Christians in the world -- eats ham and potatoes and whatever else you eat on Easter.
We're hoping Starbucks will be open. Not that I'll be drinking. Not on $47 that's got to last till Friday. But I'll be having a blast, and so will Benjy and Saskia, which you can do on $0.00 per day. I don't know what Lars will be up to, but if I had to guess I'd say jogging and then snoozing.
Happy Passover and Easter, peeps!
Wednesday, April 4, 2012
Weird Googling
People come this way via the weirdest Google searches. This week a person looking for "Asperger cross dressing pantyhose" dropped by. Oh, okay. Really? And a person -- plagiarizing high school student is my guess -- looking for "A small paragraph about nothing ventured nothing gained" landed here.
Two people -- TWO -- were hoping to find out more about these:
Two people -- TWO -- were hoping to find out more about these:
(Codpieces -- yes, slightly x-rated, except when I write about them)
Then there was the person who Googled "Dog lying on sofa." No wonder he or she landed here -- I have the original dog-on-sofa. He lives on the one with the most pillows.
Sometimes -- and this is cool -- all the folks who drop by on a given week come here by design: they've Googled some variation of The Striped Nickel. (Last week someone searched for "The Spotted Nickel." Fortunately they found me. Whew -- close call!)
I love that you, Readers, are coming here and coming back. Even my recent droughts haven't deterred you. In a little over five months I've had more than 8,000 hits on this site, including, of course, a few "vanity hits," and a large handful by grandma and grandpa. That is SO cool. I would tell Benjy about it but he might think he's famous. I wouldn't want to deal with a kid who's too important for his morning oatmeal.
I would tell Saskia but she'd just roll her eyes. And if she found out I was writing about her she'd KILL me. So I'll just have to enjoy the fact on my own. Or maybe I'll tell Lars. I'm still waiting for him to forgive me for naming him "Lars" -- not that his own Teutonic name is any less Euro. Just slightly more southerly.
Monday, April 2, 2012
I'm sorry, I couldn't turn off the cute
Check out THIS baby (it's a pygmy hippo):
I think I yoinked this pic from Yahoo News. If they yell at me I will have to take it down, so enjoy it while ye may.
I think I yoinked this pic from Yahoo News. If they yell at me I will have to take it down, so enjoy it while ye may.
I Don't Know How She Does It
Did you ever read that book, I Don't Know How She Does It? It's a fun read, all about a working mom competing (in her mind) against the "mothers superior" (read: stay-at-home moms) and feeling like she'll never hold it together. Of course, she does, and with aplomb (and a large measure of stress and disarray).
Well, I felt rather like Kate Reddy, the heroine of that book, when I was working full time and parenting two children, one disabled -- although I'm not sure I did anything with aplomb. I kept us all fed and clothed (more or less -- not counting the holes), and kept Benjy alive. I guess that's saying something.
Now I am not working and I feel, if possible, even more like I can't hold it together. I didn't feel that way at first. But now that Saskia's illness, whatever it is, is waxing, now that we are seeing "ologists" every week, and she continues to feel exhausted and full of malaise, grow new lesions, lose hair, look ghastly white, AND SO ON, I am beginning to think I'm going to lose it.
I would give my left arm -- and I'm left-handed -- to be one of those prosperous, healthy families we seem to be surrounded by. I'd be willing to forgo prosperous. Just make us healthy, please.
So here I am, losing it. Actually, not so much. Instead of losing I am gaining. What consoles me is food, preferably of the carby variety. So I'm eating myself silly. Why oh why couldn't I be one of those gals who STOPS eating under stress? Just lucky, I guess.
Good thing I am tootired lazy to go shopping to replenish our stores; all I had in the house this morning was kale. So I will shortly be consuming some AWESOME homemade kale chips. (I really do mean awesome. Kale chips are yummy AND good for you.)
Next on today's agenda is a meeting with Saskia's teachers, to plead with them that they reduce Saskia's homework. she comes home from six hours of school to face four to six hours of homework on a regular basis. This must violate some child labor law, don't you think?
Anyway, that's my rant for today. I promise to return to the old upbeat programming as soon as possible. So stay tuned!
Well, I felt rather like Kate Reddy, the heroine of that book, when I was working full time and parenting two children, one disabled -- although I'm not sure I did anything with aplomb. I kept us all fed and clothed (more or less -- not counting the holes), and kept Benjy alive. I guess that's saying something.
Now I am not working and I feel, if possible, even more like I can't hold it together. I didn't feel that way at first. But now that Saskia's illness, whatever it is, is waxing, now that we are seeing "ologists" every week, and she continues to feel exhausted and full of malaise, grow new lesions, lose hair, look ghastly white, AND SO ON, I am beginning to think I'm going to lose it.
I would give my left arm -- and I'm left-handed -- to be one of those prosperous, healthy families we seem to be surrounded by. I'd be willing to forgo prosperous. Just make us healthy, please.
So here I am, losing it. Actually, not so much. Instead of losing I am gaining. What consoles me is food, preferably of the carby variety. So I'm eating myself silly. Why oh why couldn't I be one of those gals who STOPS eating under stress? Just lucky, I guess.
Good thing I am too
Next on today's agenda is a meeting with Saskia's teachers, to plead with them that they reduce Saskia's homework. she comes home from six hours of school to face four to six hours of homework on a regular basis. This must violate some child labor law, don't you think?
Anyway, that's my rant for today. I promise to return to the old upbeat programming as soon as possible. So stay tuned!
Thursday, March 22, 2012
Ugh
This is the longest space between posts yet. There are a couple of reasons for long spaces between posts:
1. We're happy, regulated, and not in train wreck mode. (Who wants to read about The Orient Express with no murder -- just a bunch of prosperous, well-dressed folks eating caviar and gliding across the landscape in all their poshness?)
2. We HAVE been in train wreck mode and therefore writing is too hard. Sometimes sheer confusion -- or exhaustion -- keeps me silent.
The past week we've been a bit of both. We were worried about Saskia's health, and worried about Benjy's school placement. We've had half-answers and full answers. some we like, some we don't.
The worst first: Saskia.The better part of the past 24 hours I was supremely happy. I had no further information about Saskia's lupus-like symptoms (lupus can take years to diagnose) but we'd gotten her in to a nurse practitioner at a dermatology practice, because the lesions she had developed on her arms, legs, trunk and face over the past six weeks had gotten worse and were multiplying.
Her PCP did not know what they were. The rheumatologist said they did not look lupus-like. So off we went to the dermatologist. (If you wait a few weeks I'll be writing about her other ologist -- the hematologist. Isn't life grand!)
I'm going to start abbreviating because I'm sick of writing out these names. The derm ruled out our greatest fear -- DO WE HAVE BEDBUGS????? YUUUUCK!!!!!! -- and said it WAS atypical for a lupus rash but she would test for that. The other thing she was going to test for was something called PLEVA.
WHATEVER YOU DO, DO NOT GOOGLE PLEVA.
I Googled pleva. I got scared. I exxed out. But yesterday (hence my 24 hours of happiness) the NP called to say, yes it IS pleva, but it's acute pleva as opposed to chronic, and what that means is, after a month or two it will be gone forever.
I did a little happy dance. Because we can live with two months, right?
So I kept on feeling good, had an enjoyable writing group meeting, and when Lars got home at 11, the two of us took the hellacious one for a walk. That's when the somewhat less than 24 hours of happiness leached away. Because Lars said, "Did you actually READ those articles on pleva? Because it doesn't seem to be as benign as the NP said."
Crap.
I decided to wait until this morning to delve more deeply into the charming subject of acute pleva. And someone must be lying, because the story I got from the NP is incompatible with what I read on line, which is that you can be stuck with these lesions FOREVER. The pictures made me gag. Saskia's are not so offensive -- it looks a bit like she has measles -- and not so plentiful. But she is a FOURTEEN-YEAR-OLD GIRL! She is profoundly mortified by her face and body right now. the other day when it was almost 80 degrees out she wore a sweatshirt all day in her un-airconditioned school. she came out totally dehydrated.
My poor, poor girl. I would give anything to take this from her. I wish it were me -- what would it matter? but for HER? And if she inherited my breast cancer gene she'll have a whole lot of impossible, maybe life-changing decisions to make when she's a young woman, I hope pleva and all her other lupus-y shit is enough. Whoever makes these decisions (her genes, I guess) had better have some compassion.
It's hard not to wallow is despair right about now, I look at other families whose kids don't seem to have any medical or psychiatric issues, and I think, WHY US?? Of course, I realize there are hidden issues for just about everyone. but still, we are surrounded by healthy, happy kids here in our town -- and our kids have been stricken so hard. It is NOT fair. (And now I'm hearing the voice of my Dad saying, "Well, life is not fair, Anna." Wise words from Dad, but they do not really help -- not then, not now.
But I DO have some good news! My fears that our school district was going to yank Benjy from the Joy School, ostensibly in his own interest but really because it is extremely expensive? Those were UNFOUNDED. The district is behind us. I suppose that could change at any time, but for now we're good.
SO: Somehow I have to keep slogging along. We all do. If anyone has any ideas for hiding dark lesions on a girl's legs, arms and face, I would love to hear them.
Today, at least, she went out in a skirt and short sleeved shirt -- even if she did insist on wearing pantyhose.
THAT, Readers, is progress.
1. We're happy, regulated, and not in train wreck mode. (Who wants to read about The Orient Express with no murder -- just a bunch of prosperous, well-dressed folks eating caviar and gliding across the landscape in all their poshness?)
2. We HAVE been in train wreck mode and therefore writing is too hard. Sometimes sheer confusion -- or exhaustion -- keeps me silent.
The past week we've been a bit of both. We were worried about Saskia's health, and worried about Benjy's school placement. We've had half-answers and full answers. some we like, some we don't.
The worst first: Saskia.The better part of the past 24 hours I was supremely happy. I had no further information about Saskia's lupus-like symptoms (lupus can take years to diagnose) but we'd gotten her in to a nurse practitioner at a dermatology practice, because the lesions she had developed on her arms, legs, trunk and face over the past six weeks had gotten worse and were multiplying.
Her PCP did not know what they were. The rheumatologist said they did not look lupus-like. So off we went to the dermatologist. (If you wait a few weeks I'll be writing about her other ologist -- the hematologist. Isn't life grand!)
I'm going to start abbreviating because I'm sick of writing out these names. The derm ruled out our greatest fear -- DO WE HAVE BEDBUGS????? YUUUUCK!!!!!! -- and said it WAS atypical for a lupus rash but she would test for that. The other thing she was going to test for was something called PLEVA.
WHATEVER YOU DO, DO NOT GOOGLE PLEVA.
I Googled pleva. I got scared. I exxed out. But yesterday (hence my 24 hours of happiness) the NP called to say, yes it IS pleva, but it's acute pleva as opposed to chronic, and what that means is, after a month or two it will be gone forever.
I did a little happy dance. Because we can live with two months, right?
So I kept on feeling good, had an enjoyable writing group meeting, and when Lars got home at 11, the two of us took the hellacious one for a walk. That's when the somewhat less than 24 hours of happiness leached away. Because Lars said, "Did you actually READ those articles on pleva? Because it doesn't seem to be as benign as the NP said."
Crap.
I decided to wait until this morning to delve more deeply into the charming subject of acute pleva. And someone must be lying, because the story I got from the NP is incompatible with what I read on line, which is that you can be stuck with these lesions FOREVER. The pictures made me gag. Saskia's are not so offensive -- it looks a bit like she has measles -- and not so plentiful. But she is a FOURTEEN-YEAR-OLD GIRL! She is profoundly mortified by her face and body right now. the other day when it was almost 80 degrees out she wore a sweatshirt all day in her un-airconditioned school. she came out totally dehydrated.
My poor, poor girl. I would give anything to take this from her. I wish it were me -- what would it matter? but for HER? And if she inherited my breast cancer gene she'll have a whole lot of impossible, maybe life-changing decisions to make when she's a young woman, I hope pleva and all her other lupus-y shit is enough. Whoever makes these decisions (her genes, I guess) had better have some compassion.
It's hard not to wallow is despair right about now, I look at other families whose kids don't seem to have any medical or psychiatric issues, and I think, WHY US?? Of course, I realize there are hidden issues for just about everyone. but still, we are surrounded by healthy, happy kids here in our town -- and our kids have been stricken so hard. It is NOT fair. (And now I'm hearing the voice of my Dad saying, "Well, life is not fair, Anna." Wise words from Dad, but they do not really help -- not then, not now.
But I DO have some good news! My fears that our school district was going to yank Benjy from the Joy School, ostensibly in his own interest but really because it is extremely expensive? Those were UNFOUNDED. The district is behind us. I suppose that could change at any time, but for now we're good.
SO: Somehow I have to keep slogging along. We all do. If anyone has any ideas for hiding dark lesions on a girl's legs, arms and face, I would love to hear them.
Today, at least, she went out in a skirt and short sleeved shirt -- even if she did insist on wearing pantyhose.
THAT, Readers, is progress.
Thursday, March 15, 2012
Anxiety -- Mine, not Benjy's
Today, I'm anxious. About both my kids.
Tomorrow Saskia and I go to the rheumatologist. I am hoping, after a year or more of observation, we will be closer to knowing if she has an autoimmune disease. Not because I want that for her -- God no -- but because knowing is better than waiting to know. At least then you can move forward. So poor Saskia will have to deal with the indignity of being examined by a rather handsome (and old -- my God he must be FORTY!!!!!!!) male doctor, who does not appear to be gay, as does her hematologist. (Gayness makes examinations a bit easier if they include disrobing.) Then there'll be lots of blood drawn, which she hates, and then we will wait a few weeks to see if her numbers have gone up or stayed still.
Probably we will be no better informed tomorrow than we are today.
I wish Saskia were all I had to worry about. But now I am concerned about the intentions of our school district. They seem to have something up their metaphorical sleeve, and I don't like it. First there was the IEP (received around 2 months after our meeting!) with errors (or, "errors," as the case may be) on the placement page. These errors could mean the difference between Ben staying where he is, at the Joy School, and being shunted off to another placement (a collaborative or in-district will be over my dead body, so if a couple months go by and you don't hear from me you'll know why).
Then, an email today from an administrator asking for a meeting about placement -- just her and me, it sounds like -- which raises a red flag in my mind. No meetings will happen without our advocate, the divine Laurel C., and Lars by my side -- and ideally, the rest of the team.
Wondering what the heck is going on with these people, what they intend for Benjy, is FREAKING ME OUT. Because, for the first time since he started school at age three, Benjy is relaxed, happy, and learning. The other day I picked him up and he was glowing, just glowing. He piled into the car and said, "I'm happy, Mom! I love my school."
Just thinking of it makes me cry. If that Chinese woman whose piece about being The Tiger Mom I read in the Wall Street Journal thinks she's tough, just wait until someone tries messing with my boy. I will be AS TOUGH AS A WOLVERINE. I mean it.
Meantime I am supposed to be writing -- I have a self-imposed deadline because a mag is waiting for a piece from me -- and all I can do it stare at the fish tank. (Ick. It needs to be cleaned.) I am anxious, and I am distracted. Maybe I've stepped into Benjy's life. (Not for the first time -- I know where his issues come from.)
Well, tomorrow is rheumatology day. Maybe by tomorrow night well be a few steps closer to clarity, and I'll be able to relax a little.
Tomorrow Saskia and I go to the rheumatologist. I am hoping, after a year or more of observation, we will be closer to knowing if she has an autoimmune disease. Not because I want that for her -- God no -- but because knowing is better than waiting to know. At least then you can move forward. So poor Saskia will have to deal with the indignity of being examined by a rather handsome (and old -- my God he must be FORTY!!!!!!!) male doctor, who does not appear to be gay, as does her hematologist. (Gayness makes examinations a bit easier if they include disrobing.) Then there'll be lots of blood drawn, which she hates, and then we will wait a few weeks to see if her numbers have gone up or stayed still.
Probably we will be no better informed tomorrow than we are today.
I wish Saskia were all I had to worry about. But now I am concerned about the intentions of our school district. They seem to have something up their metaphorical sleeve, and I don't like it. First there was the IEP (received around 2 months after our meeting!) with errors (or, "errors," as the case may be) on the placement page. These errors could mean the difference between Ben staying where he is, at the Joy School, and being shunted off to another placement (a collaborative or in-district will be over my dead body, so if a couple months go by and you don't hear from me you'll know why).
Then, an email today from an administrator asking for a meeting about placement -- just her and me, it sounds like -- which raises a red flag in my mind. No meetings will happen without our advocate, the divine Laurel C., and Lars by my side -- and ideally, the rest of the team.
Wondering what the heck is going on with these people, what they intend for Benjy, is FREAKING ME OUT. Because, for the first time since he started school at age three, Benjy is relaxed, happy, and learning. The other day I picked him up and he was glowing, just glowing. He piled into the car and said, "I'm happy, Mom! I love my school."
Just thinking of it makes me cry. If that Chinese woman whose piece about being The Tiger Mom I read in the Wall Street Journal thinks she's tough, just wait until someone tries messing with my boy. I will be AS TOUGH AS A WOLVERINE. I mean it.
Meantime I am supposed to be writing -- I have a self-imposed deadline because a mag is waiting for a piece from me -- and all I can do it stare at the fish tank. (Ick. It needs to be cleaned.) I am anxious, and I am distracted. Maybe I've stepped into Benjy's life. (Not for the first time -- I know where his issues come from.)
Well, tomorrow is rheumatology day. Maybe by tomorrow night well be a few steps closer to clarity, and I'll be able to relax a little.
Tuesday, March 13, 2012
Poor Saskia
Okay, Peoples, I have officially gone over the crunchy-granola edge. I've decided to make my own shampoo, conditioner, and body wash. This is on top of the homemade household cleaners and laundry detergent I am now using.
A year ago I'd have laughed uproariously if you'd told me this was in my future.
So I had the kids in the car and I announced that we'd soon be using homemade shampoo and stuff.
Saskia screamed.
"What's wrong?" I cried, imagining a stray pin left somehow on the front passenger seat and insinuating itself into her derriere.
She drew herself up and said with a chilly dignity, "My personal hygiene is NOT NEGOTIABLE."
I laughed. Benjy said, "Come on, man. It's just shampoo."
I said, "It's wholesome. Forget the cost savings. You use my shampoo and you won't get cancer. It'll be awesome." I had just heard an episode of On Point about chemicals in household items, which scared the bejesus out of me.
Saskia rolled her eyes and flumped back in her seat. "You suck," she muttered.
"You too," I said, "and you're gonna use my shampoo if it's the last thing you do."
In case you think she's a total teenage b****, she's off tutoring special needs kids as we speak. She's a good egg, just a bit rigid.
She comes by it honestly...Lars is about as rigid as they come. He'll LOVE my homemade personal care items, though; he'll just dilute them with water to squeeze a few extra servings out of them. He's a bigger cheapskate even than I am.
A year ago I'd have laughed uproariously if you'd told me this was in my future.
So I had the kids in the car and I announced that we'd soon be using homemade shampoo and stuff.
Saskia screamed.
"What's wrong?" I cried, imagining a stray pin left somehow on the front passenger seat and insinuating itself into her derriere.
She drew herself up and said with a chilly dignity, "My personal hygiene is NOT NEGOTIABLE."
I laughed. Benjy said, "Come on, man. It's just shampoo."
I said, "It's wholesome. Forget the cost savings. You use my shampoo and you won't get cancer. It'll be awesome." I had just heard an episode of On Point about chemicals in household items, which scared the bejesus out of me.
Saskia rolled her eyes and flumped back in her seat. "You suck," she muttered.
"You too," I said, "and you're gonna use my shampoo if it's the last thing you do."
In case you think she's a total teenage b****, she's off tutoring special needs kids as we speak. She's a good egg, just a bit rigid.
She comes by it honestly...Lars is about as rigid as they come. He'll LOVE my homemade personal care items, though; he'll just dilute them with water to squeeze a few extra servings out of them. He's a bigger cheapskate even than I am.
Wednesday, March 7, 2012
Green Cleaning
Remember I told you that in the interest of frugality I would be henceforth making my own cleaning supplies? Well, I did. And today my house cleaner is using them. Two thumbs up for cheapness AND green living!
Here is what we're using:
All purpose cleaner: simply vinegar, in a spray bottle. If you want you can dilute with water.
Tub and tile cleaner: one cup baking soda and several squirts of liquid dish soap, until you have a creamy, frosting-like consistency.
Window cleaner: Two cups water, 1/4 tsp liquid dish soap, 2 tbsp vinegar, in a spray bottle.
I use white distilled vinegar, just fyi. I bought a huge jug of it for a couple bucks.
I am also going to make my own laundry detergent out of ivory soap (grated), 20 mule team borax, and washing soda (ever hear of that?). I'll let you know how it works out.
Here is what we're using:
All purpose cleaner: simply vinegar, in a spray bottle. If you want you can dilute with water.
Tub and tile cleaner: one cup baking soda and several squirts of liquid dish soap, until you have a creamy, frosting-like consistency.
Window cleaner: Two cups water, 1/4 tsp liquid dish soap, 2 tbsp vinegar, in a spray bottle.
I use white distilled vinegar, just fyi. I bought a huge jug of it for a couple bucks.
I am also going to make my own laundry detergent out of ivory soap (grated), 20 mule team borax, and washing soda (ever hear of that?). I'll let you know how it works out.
New Worries
Having a child with a disability can be heartbreaking. And terribly difficult. Having two? Or three? I can't imagine. Sometimes I try to, and it's a good perspective builder. Our lives are hard, but they could be harder.
Sometimes all I have to do is think of my parents, who lost a child. How on earth can you survive that? They did, though, even if they thought they wouldn't. They epitomize strength, grace, and optimism. I love and admire them so much. And I have always been grateful that cancer is not one of the things we've had to confront -- not yet, anyway.
But now we may be joining the ranks of people with two sick kids. Because it's looking increasingly likely that something is wrong with Saskia. For the past year or so she's been under medical investigation. There are signs of an autoimmune disease like lupus. There are also signs of a hematological disease. Those signs are still ambiguous. We may not have a definitive diagnosis for another year or more. And I am scared to death.
The visits to PCP and specialists have begun again in earnest after six months' reprieve. I am trying hard to avoid Google. Trying hard not to imagine the effects steroids would have on Saskia if she has lupus and has to take them. I'm reading the headline Nick Cannon says, 'Lupus is eating my kidneys" and thinking, Shit.
But then, there are entire towns in the south and mid-west that have been wiped off the map. Entire families have died, sucked up into a deadly maelstrom of wind and debris. What we have, we can live with. I think.
We have two people to help us on this journey -- they've helped us through all our journeys -- who have lived through any parent's worst nightmare and come out of it whole. They'll get us through -- won't you, mom and dad?
Sometimes all I have to do is think of my parents, who lost a child. How on earth can you survive that? They did, though, even if they thought they wouldn't. They epitomize strength, grace, and optimism. I love and admire them so much. And I have always been grateful that cancer is not one of the things we've had to confront -- not yet, anyway.
But now we may be joining the ranks of people with two sick kids. Because it's looking increasingly likely that something is wrong with Saskia. For the past year or so she's been under medical investigation. There are signs of an autoimmune disease like lupus. There are also signs of a hematological disease. Those signs are still ambiguous. We may not have a definitive diagnosis for another year or more. And I am scared to death.
The visits to PCP and specialists have begun again in earnest after six months' reprieve. I am trying hard to avoid Google. Trying hard not to imagine the effects steroids would have on Saskia if she has lupus and has to take them. I'm reading the headline Nick Cannon says, 'Lupus is eating my kidneys" and thinking, Shit.
But then, there are entire towns in the south and mid-west that have been wiped off the map. Entire families have died, sucked up into a deadly maelstrom of wind and debris. What we have, we can live with. I think.
We have two people to help us on this journey -- they've helped us through all our journeys -- who have lived through any parent's worst nightmare and come out of it whole. They'll get us through -- won't you, mom and dad?
Thursday, March 1, 2012
Making Ends Meet
A work opportunity for the fall has just presented itself to me -- nothing big, but bigger that the $0 I am currently bringing in -- and for a very few minutes I considered it.
Then I thought: what happens if the fall brings another crisis?
The shorter days tend to cause Benjy heightened depression and anxiety. He misses school, or goes in late, because I can't get him to raise his head and face the world. He wants to hurt himself, or to end his life. At least, he has in each of the past several autumns. It's not limited to the shorter days -- last spring he was a wreck too -- but it begins with them.
So a job starting in September would be a disaster waiting to happen.
Am I resentful? No, not really. More like resigned. These are the cards I drew. My sister, who died at 36, drew worse ones. And as I've said before, I like not working. Until I get bored, or tired of being poor -- poorer, that is -- I'll just carry on taking care of family and household, putting out fires, and writing when I can.
So, how do we manage on what is, for the town where we live, a SMALL yearly income? I've been thinking about that recently. We've tightened our belts for sure, but in some areas we are actually spending more.
Belt tightening:
Food -- we NEVER get take-out or go out to eat anymore. I look for what's on sale. I only buy store brands (when possible). Sometimes, it's frozen rather than fresh. (Veggies and even meat. You can get frozen salmon fillets for about $1.99 a pound -- and they're frozen fresh, so they're fine. Frozen chicken breasts have been more hit or miss -- but also cheap.) Beans, people. I have a GREAT vegetarian chili recipe! Pasta is out right now because I am going the low carb route -- but in general it's a cheap way to eat if you can find ways to keep it interesting.
Entertainment -- What??
Clothes -- Savers, baby! On a generous day, Target.
Household items -- Craigslist is my first stop. Also good: Needham "transfer station" (Read: dump). They have a take-it-or-leave-it area. You can get some good stuff there. We have friends who have furnished their entire house from the dump. No kidding. There's a Family Dollar store near Benjy's fencing club, and I am going to check it out on Saturday. And good old TJ Maxx has good prices on housewares ($6.99 tablecloth, anyone?) and things like coffee (fancy brands you never heard of for 4 bucks) -- not to mention the coolest, poshest soaps and toiletries for a steal.
Areas where we are spending more (or the same as when I was working):
House cleaning -- Well, we still have someone cleaning our house twice a month. Terrible, I know -- and we may have to cease and desist. That'll be a last resort, though, as I DESPISE cleaning my house.
Cell phones -- We said ta-ta to our old dumb phones and got a couple of iPhones (last year's 3Gs, for $0.99 each at AT&T -- but the data plan costs more by about $40 per month).
Cable -- We were possibly the last folks in America to cast off our old TV and buy an HDTV (although it WAS refurbished. Still pricey). Now, cable costs us more.
Tutoring -- Saskia just started with a math tutor. That's costing us $200 per month. Ouch!
Fencing -- Benjy has FINALLY found a sport he likes and can be successful at. And is getting regular exercise beyond pushing a mouse around. How can I say no. Damage: $125 per month.
Most months we only break even, but we sure do feel virtuous. We're aware of where our money is going for the first time ever. We even keep a monthly expense spreadsheet. And have made -- and adhere to -- a budget.
(Wait -- have our bodies been colonized by aliens?? Responsible, financially savvy aliens??).
And so far we've not bounced any checks! The jury is out on whether we really will make it, but at this moment, my money's on us.
Then I thought: what happens if the fall brings another crisis?
The shorter days tend to cause Benjy heightened depression and anxiety. He misses school, or goes in late, because I can't get him to raise his head and face the world. He wants to hurt himself, or to end his life. At least, he has in each of the past several autumns. It's not limited to the shorter days -- last spring he was a wreck too -- but it begins with them.
So a job starting in September would be a disaster waiting to happen.
Am I resentful? No, not really. More like resigned. These are the cards I drew. My sister, who died at 36, drew worse ones. And as I've said before, I like not working. Until I get bored, or tired of being poor -- poorer, that is -- I'll just carry on taking care of family and household, putting out fires, and writing when I can.
So, how do we manage on what is, for the town where we live, a SMALL yearly income? I've been thinking about that recently. We've tightened our belts for sure, but in some areas we are actually spending more.
Belt tightening:
Food -- we NEVER get take-out or go out to eat anymore. I look for what's on sale. I only buy store brands (when possible). Sometimes, it's frozen rather than fresh. (Veggies and even meat. You can get frozen salmon fillets for about $1.99 a pound -- and they're frozen fresh, so they're fine. Frozen chicken breasts have been more hit or miss -- but also cheap.) Beans, people. I have a GREAT vegetarian chili recipe! Pasta is out right now because I am going the low carb route -- but in general it's a cheap way to eat if you can find ways to keep it interesting.
Entertainment -- What??
Clothes -- Savers, baby! On a generous day, Target.
Household items -- Craigslist is my first stop. Also good: Needham "transfer station" (Read: dump). They have a take-it-or-leave-it area. You can get some good stuff there. We have friends who have furnished their entire house from the dump. No kidding. There's a Family Dollar store near Benjy's fencing club, and I am going to check it out on Saturday. And good old TJ Maxx has good prices on housewares ($6.99 tablecloth, anyone?) and things like coffee (fancy brands you never heard of for 4 bucks) -- not to mention the coolest, poshest soaps and toiletries for a steal.
Areas where we are spending more (or the same as when I was working):
House cleaning -- Well, we still have someone cleaning our house twice a month. Terrible, I know -- and we may have to cease and desist. That'll be a last resort, though, as I DESPISE cleaning my house.
Cell phones -- We said ta-ta to our old dumb phones and got a couple of iPhones (last year's 3Gs, for $0.99 each at AT&T -- but the data plan costs more by about $40 per month).
Cable -- We were possibly the last folks in America to cast off our old TV and buy an HDTV (although it WAS refurbished. Still pricey). Now, cable costs us more.
Tutoring -- Saskia just started with a math tutor. That's costing us $200 per month. Ouch!
Fencing -- Benjy has FINALLY found a sport he likes and can be successful at. And is getting regular exercise beyond pushing a mouse around. How can I say no. Damage: $125 per month.
Most months we only break even, but we sure do feel virtuous. We're aware of where our money is going for the first time ever. We even keep a monthly expense spreadsheet. And have made -- and adhere to -- a budget.
(Wait -- have our bodies been colonized by aliens?? Responsible, financially savvy aliens??).
And so far we've not bounced any checks! The jury is out on whether we really will make it, but at this moment, my money's on us.
Monday, February 27, 2012
Overheard
Words overheard in the Delaunay household tonight:
Hominid
Theropedic
Sauropods
Coelophysis
These were not part of a conversation between the over-educated parental units who reside here. Nuh-uh, dude. In fact, Lars and I would only have known the meaning of one of those words if the tween who lives here hadn't enlightened us.
It maddens me that the jury is out on our boy's future. He is so damn smart he takes my breath away. But he can barely dress himself. He can't manage to do anything that has expectations attached to it. He is addicted --addicted! -- to his computer. I loved listening to him play his violin as much as I love hearing him talk about bird-hipped and lizard-hipped dinosaurs. But I will probably never hear him play again, because my admiration, and his teacher's, made him crumple.
Benjy's either going to live a gorgeous, astonishing life -- write a brilliant book on paleontology, discover a new dinosaur fossil, win a Nobel Prize -- or he's going to be with us until we die, collecting disability payments, gaming, collecting more and more knowledge about the world which he will never put to use.
It's possible he'll do something in-between. Get a job in the fish department at Petco. Breed fennec foxes in the backyard. Maybe he'll even be a husband and a dad -- which is far from in-between. I bet he'll be a great husband and dad. Just not a well-dressed one.
What I know for sure is that, whatever he does, he will always dazzle me.
Hominid
Theropedic
Sauropods
Coelophysis
These were not part of a conversation between the over-educated parental units who reside here. Nuh-uh, dude. In fact, Lars and I would only have known the meaning of one of those words if the tween who lives here hadn't enlightened us.
It maddens me that the jury is out on our boy's future. He is so damn smart he takes my breath away. But he can barely dress himself. He can't manage to do anything that has expectations attached to it. He is addicted --addicted! -- to his computer. I loved listening to him play his violin as much as I love hearing him talk about bird-hipped and lizard-hipped dinosaurs. But I will probably never hear him play again, because my admiration, and his teacher's, made him crumple.
Benjy's either going to live a gorgeous, astonishing life -- write a brilliant book on paleontology, discover a new dinosaur fossil, win a Nobel Prize -- or he's going to be with us until we die, collecting disability payments, gaming, collecting more and more knowledge about the world which he will never put to use.
It's possible he'll do something in-between. Get a job in the fish department at Petco. Breed fennec foxes in the backyard. Maybe he'll even be a husband and a dad -- which is far from in-between. I bet he'll be a great husband and dad. Just not a well-dressed one.
What I know for sure is that, whatever he does, he will always dazzle me.
Friday, February 24, 2012
Lucky
As a scholar of the nineteenth century, and a reader who has spent loads of time in earlier centuries as well, I've often imagined life -- my life, the lives of my family and friends -- at a different time.
When I was twelve years old and reading Dickens, I thought I'd been born too late. Too late to marry him, that is. Or better yet, his fictional self, David Copperfield. (I did not know then what I later learned about Dickens -- I would not have been his wife for a million bucks. David? Yeah, of course. He's pretty nice and pretty hot, except when he's trying out being a dandy, walking around in a corset and tiny boots. Don't ask.)
Anyway, I remember telling my dad that I'd been born too late, and he set me straight. "You would not want to have diabetes, or cancer, or a bad back, in 1840," he said. These days I would add to that, "You would not want to have a baby then, either."
Just think of it: if you'd had what was thought to be breast cancer, before about 1846, you'd have a choice: a mastectomy without anesthesia (the author Fanny Burney made this choice in the 18th century) or death. Great options, right?
If you had a mental health disorder -- and sometimes even if you didn't, especially if you were female -- you could end up in a "lunatic asylum." Look at the last plate in William Hogarth's series "A Rake's Progress" and you'll get a sense of what that was like in the 18th century.
Not only were conditions barbaric but the public could pay a couple of shillings on a Sunday afternoon and gawk at the crazies (see those well-dressed ladies all lit up, with the fans?). All in a day's entertainment, folks.
Imagine if your child had autism. Or Tourette's syndrome. I can just imagine what would have happened to the person with the tics in Salem in the 17th century -- can't you? Imagine if you slipped a disc, but you were a farmer and had to labor in the fields if your family was going to eat. Have you ever felt the pain of a ruptured disc? I have, and I feel damn lucky to live in the age of Vicodin and Percocet, not to mention general anesthesia.
If I had lived in the nineteenth century and been married to Dickens, there would be a good chance I'd die of "child bed fever" (puerperal fever) after giving birth to one of his innumerable children (actually, there might only have been one! Catherine Dickens got lucky). That's because middle-class women began having their babies in hospitals instead of at home in the mid-Victorian era -- but too bad for them, because doctors did not know they had to WASH THEIR HANDS after leaving morgue for the maternity ward. Germ theory wouldn't fully be in place until later in the century.
So don't you feel lucky to live when you do? For all its crappiness, the twenty-first century is a pretty good time to be alive. (Hello? iPhones!) My Aspie, anxious and depressed son, my husband with the slipped disc, me with my own broken gene (BRCA-1, the breast cancer gene), my mother who had a scary encounter with global transient amnesia (she completely lost her short-term memory for 24 hours), my dad who had prostate cancer 20 years ago -- we are all LUCKY we live now, and not then.
Put that in your pipe and smoke it.
When I was twelve years old and reading Dickens, I thought I'd been born too late. Too late to marry him, that is. Or better yet, his fictional self, David Copperfield. (I did not know then what I later learned about Dickens -- I would not have been his wife for a million bucks. David? Yeah, of course. He's pretty nice and pretty hot, except when he's trying out being a dandy, walking around in a corset and tiny boots. Don't ask.)
Anyway, I remember telling my dad that I'd been born too late, and he set me straight. "You would not want to have diabetes, or cancer, or a bad back, in 1840," he said. These days I would add to that, "You would not want to have a baby then, either."
Just think of it: if you'd had what was thought to be breast cancer, before about 1846, you'd have a choice: a mastectomy without anesthesia (the author Fanny Burney made this choice in the 18th century) or death. Great options, right?
If you had a mental health disorder -- and sometimes even if you didn't, especially if you were female -- you could end up in a "lunatic asylum." Look at the last plate in William Hogarth's series "A Rake's Progress" and you'll get a sense of what that was like in the 18th century.
Not only were conditions barbaric but the public could pay a couple of shillings on a Sunday afternoon and gawk at the crazies (see those well-dressed ladies all lit up, with the fans?). All in a day's entertainment, folks.
Imagine if your child had autism. Or Tourette's syndrome. I can just imagine what would have happened to the person with the tics in Salem in the 17th century -- can't you? Imagine if you slipped a disc, but you were a farmer and had to labor in the fields if your family was going to eat. Have you ever felt the pain of a ruptured disc? I have, and I feel damn lucky to live in the age of Vicodin and Percocet, not to mention general anesthesia.
If I had lived in the nineteenth century and been married to Dickens, there would be a good chance I'd die of "child bed fever" (puerperal fever) after giving birth to one of his innumerable children (actually, there might only have been one! Catherine Dickens got lucky). That's because middle-class women began having their babies in hospitals instead of at home in the mid-Victorian era -- but too bad for them, because doctors did not know they had to WASH THEIR HANDS after leaving morgue for the maternity ward. Germ theory wouldn't fully be in place until later in the century.
So don't you feel lucky to live when you do? For all its crappiness, the twenty-first century is a pretty good time to be alive. (Hello? iPhones!) My Aspie, anxious and depressed son, my husband with the slipped disc, me with my own broken gene (BRCA-1, the breast cancer gene), my mother who had a scary encounter with global transient amnesia (she completely lost her short-term memory for 24 hours), my dad who had prostate cancer 20 years ago -- we are all LUCKY we live now, and not then.
Put that in your pipe and smoke it.
Thursday, February 23, 2012
He's Older Than You Think
I made a fantastic dinner tonight: Spicy Garlic Lime Chicken, roasted potatoes, broccoli sauteed in olive oil and garlic. My parents and I were having a fascinating conversation about how much longer the chicken took to cook than is indicated by the recipe.
Grandpa: This took a lot longer than twenty minutes.
Me: Yup.
Grandma: Those are extremely big breasts.
Benjy (grinning): That's what he said.*
Me: *giggle*
* This is a version of his response to any variation of "that's big": that's what SHE said!
Grandpa: This took a lot longer than twenty minutes.
Me: Yup.
Grandma: Those are extremely big breasts.
Benjy (grinning): That's what he said.*
Me: *giggle*
* This is a version of his response to any variation of "that's big": that's what SHE said!
Lars and the "Gardening" Clothes
So, here we are at Grandma and Grandpa's over vacation week (a real Delaunay holiday!), and I'm planning out my schedule for the week we return. You would think that, now I'm not working, there's plenty of time for leisure activities. TV. Books. Bon Bons.
You'd be dead wrong.
Every day I make a to-do list of, say, twelve items. Every day I cross off five or six, and copy the remaining items onto the top of the next day's list. I am like this little guy:
So I'm making my to-do list for next Monday, and the number one item is: Go Through Clothes.
We are buried in a mountain of clothes. Dirty laundry that just might date back to August. Socks and underwear two sizes too small, bursting out of their drawers. (Neither of my kids can close their dresser drawers.) Large piles of clothes in the corners of our "master" bedroom (the quotes are meant to signify the minuscule size of said bedroom, "master" being something of a joke in this case. Perhaps we should call it our "minion" bedroom).
In the minion bedroom, most of the visible piles belong to Lars. Not that I'm not a slob -- I am. Totally. It's just that my piles are out of sight in a laundry hamper I insisted on buying two summers ago. I filled it up at the time and haven't opened it since. Now I'm afraid to. The rest of my stray clothes go straight into the many laundry baskets that decorate our basement.
The trickiest part of this clothes project is going to be getting rid of Lars's old and holey clothes. (That would be, uh, most of them?) I try this every year or two, and each time I fail. Because unless I burn them, Lars will find them. He will pull them out of the trash, covered with egg shells and coffee grounds, and the next thing you know they're laundered and back in his drawer. When I object he tells me, "I'll use them for gardening. They're GARDENING CLOTHES."
At this point about three quarters of his garments are designated gardening clothes. Except they're not. They're just the clothes he wears to work every day. Do you think I find this humiliating? I DO. I asked him once whether his boss dresses nicely.
He said, "Are you kidding? He's gay."
"And?"
"He's a GREAT dresser."
"Doesn't he care that you wear the same shirt four days in a row and it's got holes in the elbows?"
"I wear a different t-shirt underneath most of the time, so it's okay. Anyway, he loves me."
I'll bet.
I guess I shouldn't complain. Lars is a pretty good guy, in spite of his peculiarities. He's compassionate and loving. He writes a mean Valentine's Day/birthday/anniversary card. The last one made me gasp first, and then scream. He's pretty cute, too.
I think I'll keep him.
You'd be dead wrong.
Every day I make a to-do list of, say, twelve items. Every day I cross off five or six, and copy the remaining items onto the top of the next day's list. I am like this little guy:
So I'm making my to-do list for next Monday, and the number one item is: Go Through Clothes.
We are buried in a mountain of clothes. Dirty laundry that just might date back to August. Socks and underwear two sizes too small, bursting out of their drawers. (Neither of my kids can close their dresser drawers.) Large piles of clothes in the corners of our "master" bedroom (the quotes are meant to signify the minuscule size of said bedroom, "master" being something of a joke in this case. Perhaps we should call it our "minion" bedroom).
In the minion bedroom, most of the visible piles belong to Lars. Not that I'm not a slob -- I am. Totally. It's just that my piles are out of sight in a laundry hamper I insisted on buying two summers ago. I filled it up at the time and haven't opened it since. Now I'm afraid to. The rest of my stray clothes go straight into the many laundry baskets that decorate our basement.
The trickiest part of this clothes project is going to be getting rid of Lars's old and holey clothes. (That would be, uh, most of them?) I try this every year or two, and each time I fail. Because unless I burn them, Lars will find them. He will pull them out of the trash, covered with egg shells and coffee grounds, and the next thing you know they're laundered and back in his drawer. When I object he tells me, "I'll use them for gardening. They're GARDENING CLOTHES."
At this point about three quarters of his garments are designated gardening clothes. Except they're not. They're just the clothes he wears to work every day. Do you think I find this humiliating? I DO. I asked him once whether his boss dresses nicely.
He said, "Are you kidding? He's gay."
"And?"
"He's a GREAT dresser."
"Doesn't he care that you wear the same shirt four days in a row and it's got holes in the elbows?"
"I wear a different t-shirt underneath most of the time, so it's okay. Anyway, he loves me."
I'll bet.
I guess I shouldn't complain. Lars is a pretty good guy, in spite of his peculiarities. He's compassionate and loving. He writes a mean Valentine's Day/birthday/anniversary card. The last one made me gasp first, and then scream. He's pretty cute, too.
I think I'll keep him.
Tuesday, February 21, 2012
Halcyon Days
It's been five days since I've blogged about Ben, Saskia, Lars, or the Hellacious Hound. I guess that's because things are going pretty well. For the same reason that the novels, TV dramas, and movies we all love are filled with tension and obstacles as opposed to serenity and happiness (note that the happy marriage usually occurs at the end), no one wants to read a blog about smooth sailing. Do they? Boooring.
As I look over at my boy slumbering peacefully on the adjacent couch -- knocked out by his nightly meds -- I'm reminded of the many, many nights when sleep was a desperately needed reprieve -- for him and for me. I think the two of us, on his most dysregulated days, longed for the peace a protracted sleep would bring. Sometimes, I'm ashamed to admit, I slipped him an extra Ativan in the hopes it would make him drift off. We both needed that. All four of us did.
Now, Ben is experiencing success. As a fencer. As a friend. His stable of comrades just increased one hundred percent. There were three more or less reliable friends. Now there are six -- well, okay -- five and a half. These new buddies are boys he met through the club I started -- a club for Aspies who share an interest in the computer game Minecraft. As of tomorrow, three of these boys will have had Benjy over. And that, Readers, is an astonishingly lovely gift. He's had two hour-plus phone calls with one of them. Will wonders never cease?
But still, I can't helping being on guard. Because quiet spells have never lasted. Ever. In eleven years we've never had more than a couple of months of easy living. Things have always gone south. So I cautiously embrace the halcyon days, but I do not trust them.
One of the happy things in my life right now is the loss of work. I am more relaxed, more present for my family, than I have been in years. I have not browsed the writing or education jobs on Craigslist since November. What a relief that is! And we are making it -- just. I feel sheer joy right now. I love my life. How long has it been since I was able to say that? Not sure. Several years, at least.
The best thing, apart from Benjy's general happiness, is that I am writing again -- and writing things that I'm passionate about. I've put my novel-in-progress aside. Time enough to go back to that when my agent sells the other novel and I have to finish the new one. So right now I'm writing personal essays. I ALMOST sold the essay about parenting Ben to O, the Oprah Magazine. The editor there loved it but they don't really publish parenting essays. So she's invited me to write something else for the magazine, and I have pitched an essay about coming to terms with my dead sister and the sisterhood we never shared. Now that I am not thinking about Ben every single minute I can process some of the other stuff in my life. I have another magazine in mind for the Benjy essay, and I have several other ideas for articles, including one on the price of disability -- the cost to people's (usually mothers') careers and the impact on family finances. I am also planning a profile of Ben's inspirational fencing coach (who left Cuba to come to America with literally nothing but the clothes on his back, and who, among other things, teaches fencing to the blind and to cancer patients). I am SO excited to be writing again!
Of course, keeping this blog is writing, too, and I have found it to be therapeutic and a lot of fun. People from all over the world are landing here. How cool is that? I don't have any plans to abandon it. I might have to rethink the content, though. If I can no longer write about parenting a child who wants to die, I will have to find other things to write about.
I promise they won't be boring essays on how great our lives are going. Well, okay. Once in while they probably will be.
As I look over at my boy slumbering peacefully on the adjacent couch -- knocked out by his nightly meds -- I'm reminded of the many, many nights when sleep was a desperately needed reprieve -- for him and for me. I think the two of us, on his most dysregulated days, longed for the peace a protracted sleep would bring. Sometimes, I'm ashamed to admit, I slipped him an extra Ativan in the hopes it would make him drift off. We both needed that. All four of us did.
Now, Ben is experiencing success. As a fencer. As a friend. His stable of comrades just increased one hundred percent. There were three more or less reliable friends. Now there are six -- well, okay -- five and a half. These new buddies are boys he met through the club I started -- a club for Aspies who share an interest in the computer game Minecraft. As of tomorrow, three of these boys will have had Benjy over. And that, Readers, is an astonishingly lovely gift. He's had two hour-plus phone calls with one of them. Will wonders never cease?
But still, I can't helping being on guard. Because quiet spells have never lasted. Ever. In eleven years we've never had more than a couple of months of easy living. Things have always gone south. So I cautiously embrace the halcyon days, but I do not trust them.
One of the happy things in my life right now is the loss of work. I am more relaxed, more present for my family, than I have been in years. I have not browsed the writing or education jobs on Craigslist since November. What a relief that is! And we are making it -- just. I feel sheer joy right now. I love my life. How long has it been since I was able to say that? Not sure. Several years, at least.
The best thing, apart from Benjy's general happiness, is that I am writing again -- and writing things that I'm passionate about. I've put my novel-in-progress aside. Time enough to go back to that when my agent sells the other novel and I have to finish the new one. So right now I'm writing personal essays. I ALMOST sold the essay about parenting Ben to O, the Oprah Magazine. The editor there loved it but they don't really publish parenting essays. So she's invited me to write something else for the magazine, and I have pitched an essay about coming to terms with my dead sister and the sisterhood we never shared. Now that I am not thinking about Ben every single minute I can process some of the other stuff in my life. I have another magazine in mind for the Benjy essay, and I have several other ideas for articles, including one on the price of disability -- the cost to people's (usually mothers') careers and the impact on family finances. I am also planning a profile of Ben's inspirational fencing coach (who left Cuba to come to America with literally nothing but the clothes on his back, and who, among other things, teaches fencing to the blind and to cancer patients). I am SO excited to be writing again!
Of course, keeping this blog is writing, too, and I have found it to be therapeutic and a lot of fun. People from all over the world are landing here. How cool is that? I don't have any plans to abandon it. I might have to rethink the content, though. If I can no longer write about parenting a child who wants to die, I will have to find other things to write about.
I promise they won't be boring essays on how great our lives are going. Well, okay. Once in while they probably will be.
Thursday, February 16, 2012
Hellacious Hounds and Other Furry Quadripeds
Our Hellacious Hound is a moody fellow. I suppose this can be attributed to his age: he's more or less a teenager in dog years. When he's in a positive space he's waggy and cuddly and generally sunny. But in a flash he can become growly and nip at your flanks. He is a wonderful watchdog but at the same time a barking nuisance -- and his bark is loud and shrill.
This is the HH we love:
This is the HH who disturbs the crap out of us:
This is the HH we love:
This is the HH who disturbs the crap out of us:
(Dramatization)
When you have a kid with severe sensory issues, a kid who can't bear loud noises or disruptive, unpredictable behavior, a dog like Hellacious does not always work. And yet, we adopted him (adoption can be a bit like Russian Roulette), gave him a warm, safe home. We love him in spite of his character deficits -- just as we love each other in spite of OUR character deficits (and all four of us have some, believe you me). And you know what? He loves us back. We're his family. His home.
I can't bear the thought of betraying him by taking him back to the shelter. And yet. Benjy often talks about the dog he wishes he had. The dog who is all his, who is always gentle and quiet and sunny. Who never nips at his heels or growls. Whose only desire is a boy to love.
(Remember her?)
I wish I could get him that dog -- if she exists. But I don't think that dog and OUR dog would mix -- and as imperfect as our is, he's OURS. Benjy would be a pretty sad guy if Hellacious were suddenly gone.
So we'll make do with the sunny/barky/growly/waggy hound we have. We'll wield the corrective spray bottle. And sometimes, when we're not cuddling with our extremely fluffy guy, we'll all just have to plug our ears.
Chocolate helps at times like that.
Tuesday, February 14, 2012
A Beautiful, Profound, and Heartbreaking Blog
This blog, "Little Seal," has me transfixed. Baby Ronan is dying of Tay-Sachs disease, and his mom is recording their difficult journey. I can't shake the photo of Ronan, or Emily Rapp's devastating, profound chronicle of his waning life, and the way her own life is changing.
Sometimes a little perspective is a good thing.
Sometimes a little perspective is a good thing.
Benjy and Performance Anxiety
At home, Benjy is a great clown -- when he's happy. He's an accomplished mimic. A creative performer. There are several characters he trots out on occasion -- the "G'Day Lady" chap (sorry, he's too bizarre to describe here), and the hungry, squeaky rodent, to name just two.
But performance -- academic, musical, athletic, etc -- and the expectations that go along with it, are a heavy, heavy burden to him. Homework was part of the amalgam of stressors that landed Ben in the hospital and then a special needs school, where -- at least for now -- there is no homework, and no tests. Any time Ben senses that some other person expects something from him, he crumbles.
When we realized he was a talented violinist, when his teacher was astonished every week by his progress, the speed and facility with which he learned new pieces and new, increasingly difficult techniques, he fell apart. Practicing became a burden. He spent half his lessons curled up on the couch, or watching YouTube videos of Gil Shaham or Anne-Sophie Mutter playing whatever piece he was working on, instead of playing it himself. His teacher learned that she had to walk on eggshells if she wanted to avoid precipitating a breakdown.
Now he has entirely given up the violin, much to our dismay. Today I will be returning his rented instrument to the music store. I kept holding off, just in case he would pick it up again, but those days are over.
There is nothing Ben has tried that he's been able to follow through on. Violin, video game programming class, soccer, basketball. So far he's still fencing, and three times out of four it's going okay, but I imagine when he starts feeling the weight of expectation, from his coach, from us, from his peers, he will drop out. Maybe I'm wrong -- I hope I am -- but history would seem to back me up.
The latest thing we are going to try is a Bar Mitzvah. We have a while -- until fall 2013 -- but already I am worried. This will NOT be a standard Bar Mitzvah -- anyone who's been to one understands the magnitude of learning and performing that's involved. It will be an afternoon service just with our family, maybe a close friend or two, and Benjy will carry the Torah and recite two short prayers -- the Sh'ma, and the Torah blessing. Saskia and I can teach him these -- no need for a year of tutoring like Saskia had. That would break him.
When our Rabbi told us that a celebration of Benjy, in the form of a Bar Mitzvah, was still within reach, I cried. I am not a deeply religious person. My God is simply the strength, courage, compassion, creativity -- the potential for good -- within myself. But somehow a Bar Mitzvah for Ben feels important to me -- just as a Bat Mitzvah for Saskia did. When Saskia had her day in November of 2010 we were so deeply moved. Of course, she is a very different person than Ben.She studied for a year and offered a beautiful and heartfelt "performance" -- tons of Hebrew chanting, a lively and thoughtful exegesis of her Torah portion (the one about competition between siblings, Jacob and Esau). She was a star, as she is in so many avenues of life. We just watched her onstage in the musical Oklahoma. She is a talented singer and actress -- absolutely fearless.
For Ben, there is rarely fearlessness. But sometimes he surprises us. He'll reach out to an older kid, make a connection. He'll plunge into a new situation, willing to give it a try even if it ultimately does not work out. It's just that damn performance anxiety that's keeping him down. I try so hard not to worry about the future. You've heard me say it before, corny as it is -- One Day At a Time. But how will he ever make it in life if he cannot perform, cannot handle expectations?
I'm trying hard to figure that one out. It may take me a year, or twenty.
But performance -- academic, musical, athletic, etc -- and the expectations that go along with it, are a heavy, heavy burden to him. Homework was part of the amalgam of stressors that landed Ben in the hospital and then a special needs school, where -- at least for now -- there is no homework, and no tests. Any time Ben senses that some other person expects something from him, he crumbles.
When we realized he was a talented violinist, when his teacher was astonished every week by his progress, the speed and facility with which he learned new pieces and new, increasingly difficult techniques, he fell apart. Practicing became a burden. He spent half his lessons curled up on the couch, or watching YouTube videos of Gil Shaham or Anne-Sophie Mutter playing whatever piece he was working on, instead of playing it himself. His teacher learned that she had to walk on eggshells if she wanted to avoid precipitating a breakdown.
Now he has entirely given up the violin, much to our dismay. Today I will be returning his rented instrument to the music store. I kept holding off, just in case he would pick it up again, but those days are over.
There is nothing Ben has tried that he's been able to follow through on. Violin, video game programming class, soccer, basketball. So far he's still fencing, and three times out of four it's going okay, but I imagine when he starts feeling the weight of expectation, from his coach, from us, from his peers, he will drop out. Maybe I'm wrong -- I hope I am -- but history would seem to back me up.
The latest thing we are going to try is a Bar Mitzvah. We have a while -- until fall 2013 -- but already I am worried. This will NOT be a standard Bar Mitzvah -- anyone who's been to one understands the magnitude of learning and performing that's involved. It will be an afternoon service just with our family, maybe a close friend or two, and Benjy will carry the Torah and recite two short prayers -- the Sh'ma, and the Torah blessing. Saskia and I can teach him these -- no need for a year of tutoring like Saskia had. That would break him.
When our Rabbi told us that a celebration of Benjy, in the form of a Bar Mitzvah, was still within reach, I cried. I am not a deeply religious person. My God is simply the strength, courage, compassion, creativity -- the potential for good -- within myself. But somehow a Bar Mitzvah for Ben feels important to me -- just as a Bat Mitzvah for Saskia did. When Saskia had her day in November of 2010 we were so deeply moved. Of course, she is a very different person than Ben.She studied for a year and offered a beautiful and heartfelt "performance" -- tons of Hebrew chanting, a lively and thoughtful exegesis of her Torah portion (the one about competition between siblings, Jacob and Esau). She was a star, as she is in so many avenues of life. We just watched her onstage in the musical Oklahoma. She is a talented singer and actress -- absolutely fearless.
For Ben, there is rarely fearlessness. But sometimes he surprises us. He'll reach out to an older kid, make a connection. He'll plunge into a new situation, willing to give it a try even if it ultimately does not work out. It's just that damn performance anxiety that's keeping him down. I try so hard not to worry about the future. You've heard me say it before, corny as it is -- One Day At a Time. But how will he ever make it in life if he cannot perform, cannot handle expectations?
I'm trying hard to figure that one out. It may take me a year, or twenty.
Friday, February 10, 2012
"Rich and Thin" -- ha!
If you're as old as I am (ancient!) you might remember the way college students in the early 80s liked to stick cute little white boards on their dorm room doors. These had amusing (or inspiring) pictures and often some pithy or funny text involved. You could tell your little world a lot about yourself with your white board.
Well, when I was a sophomore I had a board on my door, and I thought this thing was the bee's knees. It featured a rotund pink piggy with a shiny diamond ring in her snout. The text read: "You can't be too rich or too thin."
REALLY? Ugh.
Now, it's possible this was an ironic statement, given it was a FAT PIG who was wearing the diamond ring (a very cute fat pig). But I did not take it with an ounce of irony. No siree Bob. I EMBRACED that sentiment. I believed in it as if it were the first principle of the program of success I'd subscribed to. And you know what? A LOT of people did and do agree with me on that.
I want to be a millionaire by the time I'm thirty.
No thanks -- I don't like food, anyway. I'll take a cig if you have one, though.
As many of us know, life has a way of punishing you for the stupid things you think when you're young. Perhaps you will be pleased to hear I am neither Rich, nor particularly Thin.
It's funny how one's outlook can change over time. I once thought of myself as "upper middle class." I came from an educated family. In our humble town we stood out -- the "haves" in a sea of "have-nots." I enjoyed a fair amount of stuff. And I had the privilege to devote about twelve years of my life to higher (and then higher) education. To read Dickens and weep for poor David Copperfield and Little Nell. And that was a great thing -- I recommend reading Dickens and weeping for the vulnerable, the poor. But don't get into that rarified life where you can't feel for the guy who's cleaning the bathrooms at the airport because his life is so unlike yours.
Okay, Readers, I'm not really talking to you. More to myself. But these days I'm preaching to the choir. I still read Dickens and cry -- that is one of my greatest pleasures -- but now I feel more solidarity with the bathroom cleaner than the golf club set. By a long shot.
Having to count your every penny, and continually tighten your household belt makes all the difference, let me tell you. As does becoming aware of what it feels like to be vulnerable -- whether because you are poor, or disabled, or battered, or just a lost soul.
Having Benjy has taken me to this new place. I was already on my way, but having to confront a child's dysregulation and despair, struggling to keep him alive and safe, has made wealth and body weight a lot less important. Sure, we could use more money. We think about it, talk about it way too much, because we never have quite enough. But I'd rather be who I am now than who I was in 1983, that's for sure.
In other words, these days I like the pig a lot more than I like the diamond.
Well, when I was a sophomore I had a board on my door, and I thought this thing was the bee's knees. It featured a rotund pink piggy with a shiny diamond ring in her snout. The text read: "You can't be too rich or too thin."
REALLY? Ugh.
Now, it's possible this was an ironic statement, given it was a FAT PIG who was wearing the diamond ring (a very cute fat pig). But I did not take it with an ounce of irony. No siree Bob. I EMBRACED that sentiment. I believed in it as if it were the first principle of the program of success I'd subscribed to. And you know what? A LOT of people did and do agree with me on that.
I want to be a millionaire by the time I'm thirty.
No thanks -- I don't like food, anyway. I'll take a cig if you have one, though.
As many of us know, life has a way of punishing you for the stupid things you think when you're young. Perhaps you will be pleased to hear I am neither Rich, nor particularly Thin.
It's funny how one's outlook can change over time. I once thought of myself as "upper middle class." I came from an educated family. In our humble town we stood out -- the "haves" in a sea of "have-nots." I enjoyed a fair amount of stuff. And I had the privilege to devote about twelve years of my life to higher (and then higher) education. To read Dickens and weep for poor David Copperfield and Little Nell. And that was a great thing -- I recommend reading Dickens and weeping for the vulnerable, the poor. But don't get into that rarified life where you can't feel for the guy who's cleaning the bathrooms at the airport because his life is so unlike yours.
Okay, Readers, I'm not really talking to you. More to myself. But these days I'm preaching to the choir. I still read Dickens and cry -- that is one of my greatest pleasures -- but now I feel more solidarity with the bathroom cleaner than the golf club set. By a long shot.
Having to count your every penny, and continually tighten your household belt makes all the difference, let me tell you. As does becoming aware of what it feels like to be vulnerable -- whether because you are poor, or disabled, or battered, or just a lost soul.
Having Benjy has taken me to this new place. I was already on my way, but having to confront a child's dysregulation and despair, struggling to keep him alive and safe, has made wealth and body weight a lot less important. Sure, we could use more money. We think about it, talk about it way too much, because we never have quite enough. But I'd rather be who I am now than who I was in 1983, that's for sure.
In other words, these days I like the pig a lot more than I like the diamond.
Thursday, February 9, 2012
National 2-1-1 Awareness Day
Every so often -- a lot, actually -- I feel enormous gratitude for the various safety nets that exist for vulnerable people. People like Benjy. Like our family. Thank God, or the gods, or the Darwinan principle that caused humans to develop a tendency toward empathy and social justice, for things like social security, and Medicaid, and yes, the dreaded Food Stamps. A lot of people would be hungry without them. And being hungry is not fun.
So I wanted to give a shout out to the United Way and its 2-1-1 service. Good stuff there. You can read the press release for National 2-1-1 Day on February 11th, below. This is specific to Massachusetts but I believe the general principle applies nationally.
For Immediate Release:
National United Way 2-1-1 Awareness Day
February 8, 2012
Every hour of every day, people need essential human services - they are
looking for training, employment, food pantries, help for an aging parent,
addiction prevention programs for their teenage children, affordable housing
options, child care options, support groups and ways of becoming part of
their community.
2-1-1 allows people to give help and to get help.
2-1-1 is an easy to remember telephone number that connects people with
important community services and volunteer opportunities.
In 2010, 2-1-1 services in the United States answered more than 16.4 million
calls.
On February 11, (2/11) 2-1-1 centers across the nation will celebrate
National United Way 2-1-1 Awareness Day to highlight the vital role this
service plays in communities across the nation. Currently, over 86% of the
U.S. population has access to a 2-1-1 service.
2-1-1 is available to all residents of Massachusetts.
In Massachusetts in 2011, Mass 211 handled over 82,000 direct calls from
individuals and families looking for connection to services. There was an
additional 100,000+ searches on the public database available at
<http://www.mass211help.org
The top calls to Mass 211 in 2011 included housing-related calls
(eviction/foreclosure prevention, homeless shelters), food-related (food
pantries and food stamps-SNAP), and utility bill payment assistance.
A caller to 2-1-1 will reach a trained Information and Referral Specialist
who will help them prioritize their needs, explore the options and programs
that are available and make referrals to services that will best fit the
caller's needs. 2-1-1 I&R specialists empower callers by educating them
about programs so that informed decisions can be made.
In order to provide the most accurate resource information available, Mass
211 maintains a comprehensive, continually updated database of health and
human services. This database contains information on basic needs, programs
for youth and older adults, substance abuse treatment resources, health
services and more. Mass 211 is part of a statewide network of
community-based Child Care Resource and Referral Agencies that help match
families with Early Education and Care Educators and other resources that
help children grow and learn. Mass 211 Specialists screen families for child
care subsidy eligibility and add qualified families to the state's wait
list. Mass 211 also serves as the Commonwealth's primary telephone
information call center during times of emergency.
2-1-1 is available 24 hours a day, 7 days a week by dialing 2-1-1 or
visiting
<http://www.mass211help.org
Calls to 2-1-1
are confidential and anonymous. Translation and TDD/TTY services are
available. Mass 211 is a program of your local United Way.
So I wanted to give a shout out to the United Way and its 2-1-1 service. Good stuff there. You can read the press release for National 2-1-1 Day on February 11th, below. This is specific to Massachusetts but I believe the general principle applies nationally.
For Immediate Release:
National United Way 2-1-1 Awareness Day
February 8, 2012
Every hour of every day, people need essential human services - they are
looking for training, employment, food pantries, help for an aging parent,
addiction prevention programs for their teenage children, affordable housing
options, child care options, support groups and ways of becoming part of
their community.
2-1-1 allows people to give help and to get help.
2-1-1 is an easy to remember telephone number that connects people with
important community services and volunteer opportunities.
In 2010, 2-1-1 services in the United States answered more than 16.4 million
calls.
On February 11, (2/11) 2-1-1 centers across the nation will celebrate
National United Way 2-1-1 Awareness Day to highlight the vital role this
service plays in communities across the nation. Currently, over 86% of the
U.S. population has access to a 2-1-1 service.
2-1-1 is available to all residents of Massachusetts.
In Massachusetts in 2011, Mass 211 handled over 82,000 direct calls from
individuals and families looking for connection to services. There was an
additional 100,000+ searches on the public database available at
<http://www.mass211help.org
The top calls to Mass 211 in 2011 included housing-related calls
(eviction/foreclosure prevention, homeless shelters), food-related (food
pantries and food stamps-SNAP), and utility bill payment assistance.
A caller to 2-1-1 will reach a trained Information and Referral Specialist
who will help them prioritize their needs, explore the options and programs
that are available and make referrals to services that will best fit the
caller's needs. 2-1-1 I&R specialists empower callers by educating them
about programs so that informed decisions can be made.
In order to provide the most accurate resource information available, Mass
211 maintains a comprehensive, continually updated database of health and
human services. This database contains information on basic needs, programs
for youth and older adults, substance abuse treatment resources, health
services and more. Mass 211 is part of a statewide network of
community-based Child Care Resource and Referral Agencies that help match
families with Early Education and Care Educators and other resources that
help children grow and learn. Mass 211 Specialists screen families for child
care subsidy eligibility and add qualified families to the state's wait
list. Mass 211 also serves as the Commonwealth's primary telephone
information call center during times of emergency.
2-1-1 is available 24 hours a day, 7 days a week by dialing 2-1-1 or
visiting
<http://www.mass211help.org
Calls to 2-1-1
are confidential and anonymous. Translation and TDD/TTY services are
available. Mass 211 is a program of your local United Way.
Monday, February 6, 2012
Parenting 101
Parenting a child might just be the hardest job on the face of the earth. Okay, it may not rank with those jobs Benjy watches on TV ("The World's Dirtiest Jobs"??) in terms of ickiness -- although, on the other hand, I think we've all had poop under our fingernails at one point or another -- but man, is it challenging.
Especially if your kid is a moving target.
What you do on Monday when your kid is smiling and functional is completely different than what you will do on Tuesday when she is knocking her head against the wall/searching for knives/Googling the phrase "help I want to die." And chances are, no one will be there to advise you in the midst of the head-banging. You will have to run on instinct. Or pray for divine guidance (although in my experience this route takes too long and is better undertaken in an "emotion recollected in tranquility" sort of mode ;).
I wish someone had published a book on how to REALLY do this job. (I know, there are a million of them out there, but what good are they when things change by the hour?) I would make said book my next writing project except it would take forever to compose because it would be in constant revision. What I mean by this is that my store of parenting knowledge is in constant flux. When Benjy evolves in some new way, my brilliant parenting notions -- for example, oh, you've got to be matter-of-fact when he's curled up in a ball and unresponsive -- are shot to hell. Because all of a sudden, matter-of-factness drives him over to the knife block.
You can read all the parenting books you want, but when the chips are down it's still you and your kid. No one will take that burden, and that privilege, away from you.
I feel somewhat like a deer, always on alert, always listening for some chilling change in the environment -- a new sound, a sudden breeze, a scent. I have to listen, and watch, and sense my environment for changes in Benjy's emotional state. Can I take a few moments and enter receipts into our finance spreadsheet? Can I write a little? Clean the kitchen? Or do I need to be parked right beside Ben on the couch, bodies in contact, to feel if his is clenched, or shaking. To sense if he is going down.
Now, don't get me wrong. I know that parenting is hard for just about anyone. You take a fourteen-year-old girl and her hormones, and you've got a parenting nightmare. Make it a boy and it's double trouble. Homework issues, bullying, weight issues, you name it. It's all a challenge, with or without a disability thrown in.
But you know what? Sometimes we get it gloriously right. Almost every one of us.
It feels great when that happens, even if our trenchant insight is only valid for one hour.
Especially if your kid is a moving target.
What you do on Monday when your kid is smiling and functional is completely different than what you will do on Tuesday when she is knocking her head against the wall/searching for knives/Googling the phrase "help I want to die." And chances are, no one will be there to advise you in the midst of the head-banging. You will have to run on instinct. Or pray for divine guidance (although in my experience this route takes too long and is better undertaken in an "emotion recollected in tranquility" sort of mode ;).
I wish someone had published a book on how to REALLY do this job. (I know, there are a million of them out there, but what good are they when things change by the hour?) I would make said book my next writing project except it would take forever to compose because it would be in constant revision. What I mean by this is that my store of parenting knowledge is in constant flux. When Benjy evolves in some new way, my brilliant parenting notions -- for example, oh, you've got to be matter-of-fact when he's curled up in a ball and unresponsive -- are shot to hell. Because all of a sudden, matter-of-factness drives him over to the knife block.
You can read all the parenting books you want, but when the chips are down it's still you and your kid. No one will take that burden, and that privilege, away from you.
I feel somewhat like a deer, always on alert, always listening for some chilling change in the environment -- a new sound, a sudden breeze, a scent. I have to listen, and watch, and sense my environment for changes in Benjy's emotional state. Can I take a few moments and enter receipts into our finance spreadsheet? Can I write a little? Clean the kitchen? Or do I need to be parked right beside Ben on the couch, bodies in contact, to feel if his is clenched, or shaking. To sense if he is going down.
Now, don't get me wrong. I know that parenting is hard for just about anyone. You take a fourteen-year-old girl and her hormones, and you've got a parenting nightmare. Make it a boy and it's double trouble. Homework issues, bullying, weight issues, you name it. It's all a challenge, with or without a disability thrown in.
But you know what? Sometimes we get it gloriously right. Almost every one of us.
It feels great when that happens, even if our trenchant insight is only valid for one hour.
Saturday, February 4, 2012
I'm Feeling Good.
I'm feeling good today. Because of me (with a little help from Lars and our friend Dave) a bunch of kids in need of friends have a place (virtual and actual) to come together and forge new friendships.
It all started with a listserv for parents of kids with Asperger's Syndrome. Someone posted a question about the computer game Minecraft. Did anyone else's kid play it?
It turned out A LOT of people had kids who played it. And were obsessed with it.
They included my kid.
So we all started talking, via this listserv. And people started saying, "I wish our kids could connect."
So I said, "Hey, let's start a Minecraft Club." And I proceeded to do just that.
With a great deal of effort from Lars and Dave, we set up a private server, just for these Aspie kids. We needed it to be private because it has to be safe for them. Now they can play the game (which is a totally non-violent, constructive game) together. They can connect with each other over this sharedinterest obsession.
Maybe the best part, though, is that once a month, in various parts of the state, we will meet in person. I'm hosting the first meeting, and I can't wait. It'll be wonderful.
One unexpected perk from all this is that a mom who lives in a town nearby contacted me to ask if Ben might be interested in hanging out with her son in advance of our club meeting. We jumped at the chance, and yesterday Ben and this other boy became friends, bonding over the computer, their mutual love of animals, and probably a sense that each of them is different from the mainstream and under-appreciated. I tell Benjy all the time that someday people his own age will appreciate the wonderful qualities he brings to the world. This other boy has wonderful qualities too -- he's a great kid -- and I hope they will continue to appreciate each other.
So all together this is a good day. It's true I couldn't get Benjy to go his fencing class, but he did connect in a nice way with another boy on our private Minecraft server (aptly named by Ben "The Fun Bucket").
And that, Readers, is something to celebrate.
It all started with a listserv for parents of kids with Asperger's Syndrome. Someone posted a question about the computer game Minecraft. Did anyone else's kid play it?
It turned out A LOT of people had kids who played it. And were obsessed with it.
They included my kid.
So we all started talking, via this listserv. And people started saying, "I wish our kids could connect."
So I said, "Hey, let's start a Minecraft Club." And I proceeded to do just that.
With a great deal of effort from Lars and Dave, we set up a private server, just for these Aspie kids. We needed it to be private because it has to be safe for them. Now they can play the game (which is a totally non-violent, constructive game) together. They can connect with each other over this shared
Maybe the best part, though, is that once a month, in various parts of the state, we will meet in person. I'm hosting the first meeting, and I can't wait. It'll be wonderful.
One unexpected perk from all this is that a mom who lives in a town nearby contacted me to ask if Ben might be interested in hanging out with her son in advance of our club meeting. We jumped at the chance, and yesterday Ben and this other boy became friends, bonding over the computer, their mutual love of animals, and probably a sense that each of them is different from the mainstream and under-appreciated. I tell Benjy all the time that someday people his own age will appreciate the wonderful qualities he brings to the world. This other boy has wonderful qualities too -- he's a great kid -- and I hope they will continue to appreciate each other.
So all together this is a good day. It's true I couldn't get Benjy to go his fencing class, but he did connect in a nice way with another boy on our private Minecraft server (aptly named by Ben "The Fun Bucket").
And that, Readers, is something to celebrate.
Tuesday, January 31, 2012
What the Future Holds
I knew it was time to blog last night when I woke up from my dream:
I was trying to blog, and I wanted to find some images. So I searched on Google, and what I searched for was:
and
Okay, I know this is bizarre. And kind of funny. But I'd been wanting to blog and not doing so, and I guess my repressed anxiety about this emerged in my dreams.
The reason for my blogging lapse was the difficulty of my subject matter. I wanted to blog about the future, and that, Readers, is hard.
We've being wondering all of Benjy's short life what will become of him. Whether he will go to college, hold down a job and be independent, find love. Our views on this are increasingly pessimistic.
I remember a recent conversation with Lars, maybe a year ago, when I said, "I think there is a good chance Benjy will always live at home. That we will be supporting him until we die -- and then, who knows what."
I felt my stomach drop when I uttered those words. At that moment I felt utterly despairing.
But Lars did something wonderful. He said lightly, "Well, it will be kind of nice to have him around."
Oh, Lars -- I adore you! That gave me permission to think it would be okay, having our younger child with us forever. It's not that I didn't love his company, or love him, beyond measure, it's just that being a dependent for life, unable to function as an adult, is not what anyone wishes for their child. Forget the retirement life we've always dreamed about -- this is about Ben. And we were never going to get that retirement anyway; one or both of is will be working until we drop.
I think what really made me obsessed with Benjy's prospects this past week was a statement by the Asperger's Association of New England, an organization to which we belong, about the new proposed American Psychiatric Association designations that would remove Asperger's syndrome -- and PDD-NOS, and High Functioning Autism -- from the diagnostic manual. This could be a disaster for many, many people who receive sorely needed services under those diagnostic rubrics, including Ben.
Here's a small part of what AANE has to say on the subject:
"While Asperger's is sometimes called "mild" autism, there is nothing "mild"
about the impact Asperger's has on a person's life. Individuals with
Asperger's and related profiles are not less autistic than those with more
classic profiles. Rather, they are differently autistic. Though they may
have strong verbal skills and average to high overall intelligence, most
face significant challenges in social interaction, basic organizational
abilities, and daily living skills. Frequently, they are unable to find and
keep employment or live independently. Many withdraw from all socialinteraction, and suffer from crippling anxiety or depression. The dichotomy
of "high-functioning" and "low-functioning" autism is a false one."
It's the red words that really get to me. They tell me our hunches have not been so off the mark.
Of course, Benjy is not yet twelve, and time will tell. But when things start going downhill, like they are now, and functioning even at the relatively stress-free and highly therapeutic Joy School becomes a problem, then you've got to wonder. I mean, making it through college? And in the work place? Those are not easy things, even for the most typical among us.
I was trying to blog, and I wanted to find some images. So I searched on Google, and what I searched for was:
Okay, I know this is bizarre. And kind of funny. But I'd been wanting to blog and not doing so, and I guess my repressed anxiety about this emerged in my dreams.
The reason for my blogging lapse was the difficulty of my subject matter. I wanted to blog about the future, and that, Readers, is hard.
We've being wondering all of Benjy's short life what will become of him. Whether he will go to college, hold down a job and be independent, find love. Our views on this are increasingly pessimistic.
I remember a recent conversation with Lars, maybe a year ago, when I said, "I think there is a good chance Benjy will always live at home. That we will be supporting him until we die -- and then, who knows what."
I felt my stomach drop when I uttered those words. At that moment I felt utterly despairing.
But Lars did something wonderful. He said lightly, "Well, it will be kind of nice to have him around."
Oh, Lars -- I adore you! That gave me permission to think it would be okay, having our younger child with us forever. It's not that I didn't love his company, or love him, beyond measure, it's just that being a dependent for life, unable to function as an adult, is not what anyone wishes for their child. Forget the retirement life we've always dreamed about -- this is about Ben. And we were never going to get that retirement anyway; one or both of is will be working until we drop.
I think what really made me obsessed with Benjy's prospects this past week was a statement by the Asperger's Association of New England, an organization to which we belong, about the new proposed American Psychiatric Association designations that would remove Asperger's syndrome -- and PDD-NOS, and High Functioning Autism -- from the diagnostic manual. This could be a disaster for many, many people who receive sorely needed services under those diagnostic rubrics, including Ben.
Here's a small part of what AANE has to say on the subject:
"While Asperger's is sometimes called "mild" autism, there is nothing "mild"
about the impact Asperger's has on a person's life. Individuals with
Asperger's and related profiles are not less autistic than those with more
classic profiles. Rather, they are differently autistic. Though they may
have strong verbal skills and average to high overall intelligence, most
face significant challenges in social interaction, basic organizational
abilities, and daily living skills. Frequently, they are unable to find and
keep employment or live independently. Many withdraw from all socialinteraction, and suffer from crippling anxiety or depression. The dichotomy
of "high-functioning" and "low-functioning" autism is a false one."
It's the red words that really get to me. They tell me our hunches have not been so off the mark.
Of course, Benjy is not yet twelve, and time will tell. But when things start going downhill, like they are now, and functioning even at the relatively stress-free and highly therapeutic Joy School becomes a problem, then you've got to wonder. I mean, making it through college? And in the work place? Those are not easy things, even for the most typical among us.
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